Health and disease are NOT opposites

Western biomedicine is disease-focussed. Services are orientated around diseases. There are Hypertension clinics, Dermatology departments, Asthma clinics, etc. Research is focussed on diseases. The "gold standard" of the RCT is based on selection of groups of people with the same disease. (In fact, anyone with more than one disease is excluded from the trial). Teaching is constructed around diseases.
The World Health Organisation defines health as " Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. "
What if we push this definition a little further, to say that health is indeed all that WHO says it is, but it is not about the absence of disease?
Think about this - once a patient has a chronic disease, say, diabetes, hypertension, migraine, arthritis, does this mean that they will never ever be healthy again? Aren't some people with a disease potentially healthier than some people who don't have diseases?
Is anyone ever healthy? With the development of new instruments and machines we are able to diagnose many more diseases before people have any symptoms or signs of those diseases.
If health is a 100% complete set of "normal" biometrics, does anyone ever achieve it? For how long?
However, if health is "a state of complete physical, mental and social well-being" shouldn't we be concentrating on trying to achieve it? If we deal with disease then we are only doing a part of a job. The MORE important part of the job is to help the person to achieve health

Science Blog - New health aid: A meaningful life

Science Blog - New health aid: A meaningful life

RCTs and human beings

Something went wrong when Professor David Sackett's original thoughts on "evidence based medicine" turned into exercises in statistical analyses of the things which can be measured at the expense of not thinking about the things which can't be measured.
What happened was an over-reliance on the "gold standard" of the double blind randomised controlled trial. If you don't know what that means, it is a research methodology which involves randomly allocating patients to different groups, giving the different groups either different treatments or giving one group a treatment and the other a placebo (we can talk about that later!), then measuring the differences in the outcomes between the groups. The "double blind" bit means neither the patients nor the doctors know which group is getting which treatment.
There have been many criticisms of this method and many people support it as a rational way to discover the true effects of a treatment. My BIG problem with this method is the basic assumption.
What's the basic assumption?
People don't matter.
What do I mean by that? Well, the idea of "controlling" is to try to set up a trial where you rule out the human factors by balancing them between the groups. That means that, once the study gets under way, then it doesn't matter who the person is who is receiving the treatment or who the person is who is giving the treatment.
Does that strike you as a good idea?
Firstly, is it likely that it doesn't matter who the people are? No. The answer usually given is that the researchers recognise that human factors influence the outcomes but that they "control" for it by "matching" the groups. But the matching is only done on a limited, a very limited, number of parameters. Human beings are incredibly complex and can't reasonably be reduced to a small number of measurable parameters.
However, what bothers me most is that when the health service tries to use this approach to produce real services for real patients then we find that we get services designed on the basis of statistical measures, not services based on the understanding that people matter.
Does it matter who the doctor is who you consult? Yes it does. We are all different and the doctor-patient relationship is just that - it's a relationship. The people who form that relationship are the most important factors in understanding that relationship.
If we were to base our services on the recognition that people matter most, then we would make greater efforts to understand the needs and wishes of the individuals. We would develop patient-centred services to use a fashionable phrase, but we would also give prominence to the what makes it easier for those who provide the treatments to work more effectively - that's about terms and conditions of service, it's about support and encouragement for continuing education and professional development and its about morale.
If I'm going to have my hope of being treated by someome who "frankly, gives a damn" realised then that person needs to be recognised and supported as a person too.
We need services based on the needs of patients being met by therapists whose professional and human needs are also being met, not services based on the assumption that people don't matter.

bob in amalfi

bob amalfi
Originally uploaded by bobleckridge.

Upgrade to broadview

I just upgraded my internet connection to broadband and it got me thinking about the narrowness of thinking which predominates in health care.
We have health services which are created around "disease management" but it isn't disease we treat, it's people.
So, should we have health services which are about "people management"? No, I don't think so!
We should have health services which are about caring for people.
Eric Cassell and others have written about the difference between the concept of "disease" and the concept of "illness". (See Cassell's "The Nature of Suffering").
Disease is a narrow view. It's about tissues or cells or single systems. It's about pathology. It's about what can be measured with equipment.
Illness is a broad view. It's about a person's experience, or, as Cassell says, it's about "the patient's suffering". Suffering can't be measured. It can only be told. We try to understand another's suffering by listening to their stories.
To understand health, we also need to take a broad view. Hans Georg Gadamer, in his collection of essays entitled "The Enigma of Health", makes it clear that health as an experience is kind of present when we are not aware of it. He says that doctors know their job is done when they aren't needed any more.
We can take a narrow view. We can say that health is about the absence of disease and we can define and measure the disease in question. If the disease is hypertension then the job is done when the blood pressure reading is normal.
However, physicians like Guyatt have shown that there is no close correlation between biometrics like "lung function" and the health experience of people with chronic lung disease. This is what lead him to develop the Chronic Respiratory Disease Quality of Life instrument.
In fact, the whole field of "Quality of Life" research has struggled to come up ways to capture an idea of health or suffering which really does encompass the whole experience of an individual's life.

Why upgrade to a broadview?
"Evidence Based Medicine" as defined by Professor Sackett has been sadly distorted and is now frequently used as a way of cutting services. Managers do this by claiming to be scientific. They claim that if there are no "randomised controlled trials" to support an intervention then we shouldn't be making that intervention. Aside from the fact that most surgical procedures, psychotherapeutic interventions and even wound dressings, have virtually no "RCT evidence, the basic premise is that the best way to make a decision about health care is to remove the human factors. "RCTs" attempt to "control" for the people involved - the doctors and the patients. Attempting to provide evidence of effectiveness of the technology under study (usually a drug) as if it doesn't matter who the person is who is delivering the technology or who the person is who is receiving it.
This is a very narrow view.

What would a broadview look like?
People would be more important than diseases, technologies or anything which can be measured.
The people who need help, and the people who are there to help.
We would want to know, not will this intervention suppress or remove some aspect of a disease in the short term, but what will the continuing effect be and how broadly will it affect this person?
This isn't complicated. If I am sick, I want someone to help me who cares whether or not I get better and cares to relieve my suffering. Secondly, I want that person to have good technical competencies. If they only have good competencies but don't care, really, they are potentially dangerous and probably will fail to take into consideration the things which are most important to me.

Salutogenesis
In fact, a broader view is how to promote healing - repair and recovery; coping.
A narrow view is how to remove disease or normalise a biometric.
The broader view demands an understanding of "salutogenesis" - how people get well.
The narrow view focusses on "pathogenesis" - how folk get sick.

A health service as if people mattered.
As Don Berwick says in "Escape Fire", health carers exist to care for the sick, and health service managers exist to help health carers to care for the sick.
Why do we so often create systems which are upside down? Where a group of individual managers meet to decide what the sick need and then demand that health carers meet the targets which the "plan" sets. (And how often are those targets actually drawn up according to financial imperatives, rather than health imperatives?)
Let's have a health service where people are the most important element in our thinking - the people who are sick and those who are there to try and help