Heroes Not Zombies

Lord Darzi announced his proposals for changes in the NHS in England today. One of the points particularly grabbed my attention – the emphasis on the quality of health care. About time I reckon. We’re still in the midst of a target driven quantities focused health service. Too much emphasis on markers set by managers rather than patients. But hang on, I thought, it’s all very well to talk about quality but what will it actually mean? How do they intend to assess and monitor quality in health care? Couldn’t find the detail in any of the news reports so I went to the Department of Health site and downloaded the full report.

What I found about quality surprised me. I am impressed! They intend to assess three areas of healthcare quality –

1. Patient Safety. I’m glad to see this in the pole position. “First do no harm” is a centuries old piece of medical advice. Too often ignored I feel. They will assess cleanliness of health care environments, errors in prescribing and rates of healthcare associated infections. I’d like to see them add something about ADRs (Adverse Drug Reactions) and rates of surgical complications. Maybe that’ll come some time.

2. Patient Experience. Compassion, dignity and respect are to be assessed by questionnaires. There are other aspects which could be assessed (patient empowerment for example) but this is a good start.

3. Effectiveness of Care. This is the MOST interesting area. Not only will “clinical measures” be considered, but, very importantly, “patient measures”. Here’s the buzz acronym – PROMs – it stands for “Patient Reported Outcome Measures”. This is a great improvement. I know, you might find this amazing. The BIG breakthrough here is to ask patients not only what has been their experience of healthcare but what outcomes really matter to them.

Are there any particular elements of “quality” in health care do you think should be considered?

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There’s a certain professor in England who is conducting a major campaign (with the help of a few friends) against the whole of complementary and alternative medicine in general and homeopathy in particular. His name is Edzard Ernst and it seems the thrust of his campaign is to tell us that he is an expert so we should trust what he has to say and distrust anyone who disagrees with him.

I could give you many examples of the kinds of statements he makes which I disagree with but let me just focus on one he recently made in “Health Service Journal” because I think this is really the key issue of the debate.

People must not confuse the perceived benefits of so-called alternative medicine with the medical facts.

……..consumers trying alternative therapies tend to be well educated and often perceive these treatments to be effective. Perception must, however, not be equated with fact.

What are “perceived benefits”? Well, they are when a patient says they feel better. And what’s a “medical fact”? That’s a bit harder to pin down. Generally a “fact” refers to something objective. In medicine, that tends to mean something which can be measured, something physical. That’s not the only way the term “medical fact” is used however. It’s also used when someone is actually referring to a probability. Experiments in medicine (known as clinical trials) produce results which are frequently presented as “facts”. However, they are actually statistical probabilities. It’s very odd to hear people divide treatments into two categories – proven and unproven (even more odd to describe treatments as either proven or disproven). The world just doesn’t fit into two simple boxes so easily!

When a patient comes to see me complaining of pain, or fatigue, or nausea, or dizziness, or breathlessness, or any of a whole range of symptoms, they are describing their personal, subjective experience. I cannot, no matter how hard I try, know another person’s pain. So, after receiving treatment, when the patient returns to say how he or she is now, then, when they say they have less pain, they have less pain. When they say they are less fatigued, they have less fatigue. When they say they have less nausea, they have less nausea. There is no way I can tell another person I know better than they do, what they are experiencing.

Some of these patients also have objective signs of disease (but not all of them do). Those who have objective signs of disease demonstrate a non-linear relationship between those signs and their symptoms. There is NO direct one-to-one, linear relationship between, say, pain, and the size of a lesion. The amount of pain may vary with the size of the lesion, but it may not. To tell a patient that you know better than they do whether or not they are improving because only you can measurement the difference is absurd. It’s even worse with the many, many patients whose symptoms are NOT related to lesions at all (those whose tests return only “normal” readings). How do you tell them that they are not really getting better when they say that they are? Which “medical facts” are you relying on?

Having dismissed patients’ “perceptions” of improvement, Ernst and others then go on to say that even if the patient really [according to the expert] is getting better, then it is most likely to either have happened anyway (without treatment), or be due to placebo. Actually, that is a problem for every single instance of treatment. It is impossible to distinguish, in an individual, whether or not an improvement would have happened anyway (self-healing), or is due to placebo (self-healing), or is due to specific effects of the treatment (which in the case of most holistic treatments is claimed to be due to stimulation of self-healing).

I disagree with Professor Ernst. I think that for every single patient I treat, their inner, personal, unique, individual, subjective experience should never be dismissed.

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Why do some people get asthma? (In the last 25 years, the number of new asthma cases in the UK has increased six fold among children and three to four fold in adults) Well, as is the case with pretty much every single disease we know about, nobody knows. We are meaning-seeking creatures. We want to make sense of what we experience in life. Who gets any disease without thinking “why me?” And that is a very, very hard question to answer. It would be more convenient if human beings were more like machines. We’d be able to work out exactly why a particular fault had occurred, we’d be able to understand the consequences of that fault and we’d be able to fix it. But human beings are not like machines (even if the way we treat people who are ill seems to assume that they are). Not only do we not know why asthma afflicts more and more people every year, but we cannot explain to any single, individual patient – this is why you have asthma.

One of the main reasons we can’t answer these questions is that we’ve only recently begun to understand that human beings, biologically, are complex adaptive systems. As such, they have particular characteristics which make the answers to these questions hard to find.

Disease is multi-factorial. There are many things which contribute to the development of a disease in an individual. Causation is, therefore, not simple. We can’t say “X’ causes “Y”. However, we can still observe carefully, and experiment and explore to try and understand what the factors are and how they interact.

Here’s an interesting study which tries to uncover some of the factors involved in the causation of asthma. It’s that old factor “stress” again. But this time, they’ve found something interesting and thought-provoking. Not only have they found that life stresses occurring during childhood seem more common in those who develop asthma, but they’ve discovered something interesting about exactly what kind of life stresses can have this impact. In a nutshell, the stress of parents splitting up and the stress of moving home seem associated with an increased risk of developing asthma. Other major events, such as the death of a close relative, or parental unemployment don’t seem to have the same impact. How do they know? The researchers used the finding of increased blood concentrations of the neuropeptide VIP (vasoactive intestinal polypeptide) as the objective manifestion of the stress response. This, and other substances which were also found to be raised, are known to be factors in producing allergic responses, like asthma.

I think this is a useful study. It shows us some of the mechanisms that connect life events to disease and it shows us that we can’t consider all life events to be the same. What matters is what is most stressful for the person experiencing the stress, not how others rate the stressfulness of an event.

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