Monthly Archives: September 2015

What Is Normal – Can Normative Data Ever Exist In A World Of Individual Differences And Qualia

In the last few days I attended a wonderful conference in Dullstroom near the Kruger National Park in South Africa on rural doctors training, and the point was made that what was ‘normal’ training in the medical school environment would not work when planning to set up training sites for doctors in rural areas. I read a recent Twitter debate which once again discussed whether it was normal for humans to eat carbohydrates or fats, and whether our predecessors had done so in ancient / prehistoric times. Most importantly, I was reminded by Professor Mike Lambert of the University of Cape Town, my old PhD supervisor, mentor and good friend (and scientist whom I most admire) of one of the most brilliant philosophy of science articles, written by Johan Koeslag in the early 1990’s, where he examined the question of ‘what is normal’ and how we define normality. All these got me thinking of how science and medicine differentiates normality from abnormality, and how we as a society often ‘brand’ folk as abnormal based on our own world-view and social or clinical paradigms, and by doing so potentially stigmatize those that we label as abnormal.

Johan was a Physiology Professor at the University of Cape Town in the 1980’s who had a profound effect on my way of thinking (and surely a lot of other folk) during my medical and PhD training, by always making us question dogma and routine thinking in science, medicine and society, in a firm but uncondescending way. He published a number of incredibly thought provoking philosophical articles throughout his career, and while all were great, to me perhaps his best was his article on normality and how it is defined. The definition of ‘normal’ is to conform to a standard, to be usual or typical. Johan suggested that the categorisation of biological phenomena as normal or abnormal was the absolute basis of medical practice, and that without defining individuals such there could be no medical or health services. He perceived that medicine and science used the concept of normality to define at least five independent, and potentially mutually contradictory, states, namely i) not ill; ii) the best; iii) operating as intended; iv) conforming to a cultural norm; or v) the usual. But, as he described, each of these definitions or ‘states’ of normality is problematic and each has caveats which diminish their acceptability. For example the concept of ‘not ill’ as a concept of normality is challenging when one looks at a variety of symptoms that would constitute illness. Johan made the point that while a symptom could indeed often be manifestation of illness, it could also be part of ‘normal’ activities of daily life. For example, the symptoms of incapacitation, pain, swelling, bleeding and infection are all used to define illness. But related to incapacitation, is sleep then abnormal, as while we sleep we are incapacitated. Similarly, child-birth is associated with pain, an erection would be a type of swelling, menstruation is a type of bleeding, and colonic fermentation a type of infection, but none of these are pathological and would be regarding as normal activities of daily living.

Regarding the concept of normality as the ‘best’ he made the point that weather that is best for agriculture is not the best for tourism. Clinically, he used the example of atherosclerosis, and the perception that reduction of the incidence of atherosclerosis would be the ‘best’ way of prolonging lifespan and creating ‘normal’ life conditions for a longer period. Johan pointed out the ideal way of reducing the incidence of atherosclerosis was either chronic under-nutrition or an early death, both of which would mean a less than optimal capacity for productivity during the life span, and therefore prolonging the lifespan by reducing atherosclerosis would not be the ‘best’ from the perspective of a ‘useful’ lifespan. Similarly, if one increased the lifespan by attenuating the incidence of atherosclerosis, one would in effect increase the levels of degenerative diseases associated with old age as a cause of death. So Johan was making the point that what is ‘best’ is clearly relative, and ‘normal’ related to ‘best’ similarly relative to the specific condition being examined, rather than life in its totality.

Johan was also critical of using ‘operating as intended’ as a state of normality, and used examples such as if the purpose of sex is procreation, then homosexuality and masturbation would be abnormal, as would bottle-feeding babies, or indeed using the tongue to lick stamps, the eyelid to wink at a friend, or the legs to kick a soccer ball rather than walking. He felt that in particular the fields of nutrition and exercise science (and one would include sociology in many ways too) were ‘guilty’ of this ‘over-simplification’ of ‘operational intent’ as normality, firstly as scientists in this field often use teleology to explain reasons why things happen in the body or what people do or eat, and / or secondly for suggesting that this purposive behaviour comes from early evolutionary processes that caused it to be so, or that illness is related to modern folk operating differently to what humans used to do. For example, some folk believe that the ‘Banting’ high fat diet was what our evolutionary ancestors must have eaten, therefore it must be ‘right’ and should be the ‘normal’ modern diet. But Johan made the point that we cannot assume the designer’s intentions are known when it comes to life processes, nor presume that there was a static nature to how things were either initially when created if a creator was involved, or when natural selection created a certain state. Rather than things being ‘at rest’ since the time they were created or selected, life processes are continually evolving, and there is therefore no immutable process or function, and normality can only really be described as its current usage, rather than as ‘operating as intended’, as we can never be really sure why or what things ultimately were intended for. Johan similarly gave short thrift to the idea that normality is related to conforming to a ‘cultural norm’, given that this definition succumbs to its own logic, given that if a definition is associated with a relative framework it can never be absolute. While some cultures love rich, salty food, others do not, as much as some cultures find it normal for men to cry, or to watch boxing or bullfighting, while other cultures would find these to be anathema. So while we often judge behaviours as normal based on cultural norms, these can never be objective.

Johan did perceive that the ‘usual’ would perhaps be the ‘best’ definition of normality, given that it allows some latitude to what normality is or is not, and allows a ‘spread’ rather than a singularity for and of normality. But again, there are the issues of specificity when describing the ‘usual’. For examples, as Johan described, it is normal for bears to sleep continuously during winter but not humans. It is normal for babies to sleep for twenty hours per day but not adults to do so similarly. It is normal for female spiders to eat the males that mate with them, but luckily for human males this is not the case in the human species. In science, we use 95% probabilities to define the ‘usual’, but this means that some ‘normal’ folk’ will always have the chance of being defined as ‘abnormal’ based on mathematical probability rather than ‘real’ illness or abnormality. But, Johan did feel that the concept ‘of usual’ was the one that was most closest to being able to define ‘normality’ (if I read this correctly in his article), particularly when one took a constellation of symptoms or actions or functions together and examined them in a gestalt manner, where they would thus be able to create a general likeness to what is the ‘normal’ human state or behaviour. He used the example of shortness of breath – it is ‘normal’ to feel short of breath when walking up a flight of stairs, but not after brushing one’s teeth. It is normal to feel short of breath when exercising, but if one feels short of breath when at rest, and it is associated with chest pain, dizziness and sweating, it would be more like that all these symptoms combined are indicative of an abnormal / ill state.

So how does all this help us with understanding normality or defining what is normal. Perhaps from all of the above, and what Johan’s article points out, it is very difficult to say with any clarity what is normal and what is not, and one should perhaps be careful when trying to do so or when defining someone’s behaviour, actions or eating behaviour as normal or not. Science often looks at one variable and based on a study makes a conclusion on whether that variable is within a normal range or not. Scientists often use ‘operating as intended’ arguments to ‘prove’ the veracity of such statements, but as Johan so well points out, whenever one uses a teleological rather than a mechanistic argument, one is moving into the realms of conjecture rather than fact. Even worse or more concerning is using ‘cultural norms’ to explain ‘normality’. While there is a place for understanding cultural differences in both health and disease, there is a very short ‘slippery slope’ from observation to prejudice when using cultural differences to label someone or some action as ‘not normal’. We are all individuals. We all have a lot of similarities. But defining normality from similarities is always going to be problematic. While our ‘gut feeling’ often correctly tells us what is normal or abnormal behaviour or actions, as Johan so well describes, the minute one tries to objectively define normality, abnormality, illness, wellness or health, one runs into problems of relativity and subjectivity. Life is always a qualitative rather than a quantitative endeavour, and our own ‘quale’ (property of life) we perceive as the life we know, is always going to be a little different, a little personal, a little subjective and never identical to anyone else’s. That makes life the wonderfully rich tapestry which it is, but of course, it makes it hard for scientists and clinicians to define normality or abnormality, and if need be, treat illness. What is normal? The question is perhaps as impossible to answer as is where we originated from, how the earth and life on it will end, or how long is a piece of string!

The Kubler-Ross Five Emotional Stages Of Grief – Dealing With Bad News Is A Complex Business

I have been reading the fascinating Oliver Sacks autobiography “On the Move’, and was touched by his descriptions of his early neurology days interacting with patients who he had to give bad news to about their diagnosis, and was reminded of the early days of my medical career when I had to do similar. This week a career project I have been working on for a while turned out not as I wanted it, and I noted my own response to the news when I got it. I have also been part of an interesting Twitter discussion on doping in sport, involving the response of those accused of doping to the accusations levelled against them. All of these got me thinking of the Kubler-Ross model of the emotional stages of dealing with bad news, and how important they are in understanding one’s own reactions, and those one is interacting with or observing, and struggling to understand their actions and responses to receiving news or a diagnosis of something that is neither welcome nor positive.

The Kubler-Ross Model was generated by Elisabeth Kubler-Ross, a Swiss-American psychiatrist, who worked with terminally ill patients, and was horrified by how they were treated and managed, and by how death and dying in modern culture (in her case in the mid-twentieth century) were ‘hidden’ by society and not talked about or acknowledged. She encouraged the medical students she taught to both confront death and dying, and work with their patients to optimally do so. As a result of her work, she published a book about her experiences – ‘On Death and Dying’ – and proposed a theory called the Five Stages of Grief Model, outlining how people faced with death both respond to and cope with firstly the news of, then the process of, their own death. The five stages included denial, anger, bargaining, depression and finally acceptance. While her work was controversial, with some scientists and clinicians believing the model to be too simplistic, it has in many ways ‘stood the test of time’ and is now being used to explore other areas of grief and responses by individuals to bad news, and not just in the specific context of death and dying.

The first reaction to bad news in the Kubler-Ross model is denial. In this stage the individual receiving bad news believes that the diagnosis, information or news is mistaken and refuses to accept it, and ‘clings to a false, preferable reality’. There are several defined types of denial, including: i) simple denial, where the reality of the unpleasant news or facts is denied altogether; ii) minimisation, where the bad news is acknowledged, but its seriousness is denied (this is in effect a combination of both denial and rationalization); and iii) projection, where both the bad news and its seriousness is acknowledged, but responsibility for the bad news is denied by blaming somebody or something else. The denial phase is followed by a phase of anger, where the individual recognizes eventually that the denial cannot continue, either due to progression of symptoms if faced with a terminal or life threatening illness, or when evidence or facts supporting the bad news becomes overwhelming, and they become frustrated and lash out at those around them, or at the bearer of the bad news. The third phase is bargaining, which implies a sense of hope that the individual can in some way ‘overcome’ the bad news by making some bargain or compromise, such as a reformed lifestyle, with or without the comprehension that such bargaining is futile and will not change the situation in any way materially. The fourth phase is depression, where the individual becomes aware that the mathematical probability of their impending death is overwhelming, or that the bad news is surely true, and becomes depressed and goes into their own ‘shell’, refusing visitors or communication about anything, let alone their illness or bad news. The fifth, and final stage is acceptance of what has happened or what is coming, and in this important last stage individuals accept whatever fate has befallen them, and either prepare for their impending death or accept the bad news as real, but with stable emotions and a feeling of calmness and acceptance.

All these stages are clearly part of a complex pattern of coping behaviour which allows the individual to not completely collapse and become catatonic in the face of bad news, and which allows them to eventually ‘move on’ to a state of acceptance of an altered state of being that is imperfect or not what was the ideal state of the individual either at the time before they received the bad news, or for their future life plans. Why folk need to go through all these stages, and not jump immediately to the phase of acceptance, is not completely clear, but it is suggested that the process is needed to integrate new, unexpected information that dramatically conflicts with previous beliefs or plans, and which threatens one’s personal identity, life plans or way of life in a potentially permanent and negative way. Kubler-Ross suggested that not all individuals go through all five phases sequentially always, that some individuals could cycle through some of the stages in a repetitive rather than linear way, and that an individual’s personal surrounding environment could be a factor in influencing the use of a specific cycle. But, in her opinion, all folk do go through at least two of the stages after receiving bad news or a terminal clinical prognosis. Her work led her to believe that if one did not go through such stages, one would remain in denial, and continue to ‘fight’ death (or the bad news, whatever it is) or be paralysingly afraid of it, and therefore endure a more difficult and less ‘dignified’ death or an ongoing maladapted life situation or way of life (although it has been pointed out that not confronting death or bad news is for some individuals an adaptive process in itself). Interestingly, she believed that the stages were a form of communication, either externally or with oneself, and a way of someone being able to review and compare both their past life and their current state, and process this information in an ordered way that would be helpful to both the individual and those assisting them, once they realized and understood that their emotions were part of an ordered / structured process. Because of this, Kubler-Ross supported the concept of hospice care movements which supported folk with terminal illnesses during their last days and as they went through the psychological cycle described above, rather than the concept of euthanasia, which to her prevented people from ‘completing their unfinished business’ before they died, or accepting whatever loss of pride, prestige or lifestyle loss the bad news signified or entailed.

Both Kubler-Ross and others became aware that the model could be used in a variety of setting and situations when bad news was involved – be it children grieving during a parent’s divorce, grieving for a lost relationship, or problems with substance abuse. As in the examples above, it can also potentially be used when some work which one has invested a large amount of emotional energy in is irretrievably ‘lost’ or rejected with no prospect of a ‘comeback’, or when an athlete fails a drug test, that if shown to be true, has enormous impact not just on the fidelity of their past achievements and successes, but also on their current social status and perhaps even future financial wellbeing. It has also been noted that particularly during the denial and anger phases, folk can cause a lot of harm to those around them, either by projecting blame for their actions as part of the denial process on to those informing them of the bad news or discussing such news either personally in the media. Denial can take the form of: i) denial of impact, when it is related to continuing behaviour which is harmful both to the person themselves or those around them; ii) denial of cycle, when related to repetitive patterns of behaviour that are ongoing, unchanging, and negative; iii) denial of awareness, where mitigating factors are used to ‘lessen’ the severity of the bad news; and iv) most difficult to manage, denial of denial, which is an extreme form of self-delusion where the person convinces themselves that the bad news or evidence of bad actions in themselves is not true. All these forms of denial are major impediments to both changing behaviour and allowing the five grief stages to progress to the stage of acceptance and psychological peace. Folk who are in denial can clearly potentially provide great challenges and negative consequences to both themselves and to those around them who are attempting to assist them come to terms with their current life status or condition.

Whether the Kubler-Ross five stages are ‘real’ or not, or actually occur in sequential fashion as outlined by Elisabeth Kubler-Ross, they are important in helping us understand the behaviour, often initially negative, in those facing terminal illness, or the effect of bad news either in one’s family, social, or work environment. In our modern (western) society, death and dying is ‘swept under the carpet’ and not talked about or acknowledged almost at all. This in many ways perhaps makes it more difficult to come to terms with our own mortality when it is challenged or when we get our own terminal ‘death sentence’ from a doctor we go to for a worrying symptom that will not go away. Furthermore, in modern society (actually, probably since the time of the first origin of any ‘society’), most folk have developed a need to project an ‘aura’ of success and vitality, and have a belief that to be successful in society they need to do such. Because of this, when we get bad news or negative outcomes that could materially or socially affect our life and lifestyle, this becomes difficult to accept because of the perceived loss of status, or future wellbeing, or acceptance in the broader society which folk perceive will be the case if the bad news, or evidence of prior non-optimal behaviour, becomes ‘public’ knowledge. But people do accept and admire someone that says ‘sorry’ unreservedly. People do accept failure when it is acknowledged and learnt from. People not just accept, but want to help those that they love who are ill or dying. So when one is confronted with someone behaving ‘badly’ after they have received news that is not to their liking, perhaps we need to understand that they are going through some part of the Kubler-Ross cycle (though we have to be careful not to exclude the possibility of overt sociopathy or personality disorders in those behaving such). We also have to understand that when we hear the bad news of others, particularly those whom we are close to, be it one’s child, spouse, parent, friend, or work colleague, this may trigger a similar Kubler-Ross grief cycle in oneself, at the same time as the other person is going through similarly, and this can become mutually challenging and co-morbid. Each one of us faces bad news of varying degree on an almost daily basis, and unless one dies suddenly of an unexpected heart attack, each one of us is destined to eventually hear a definitive diagnosis and prognosis from a well-meaning clinician that we have a terminal illness and that our days are numbered. The challenge for us is to try and accept these setbacks and bad news with the best grace possible, and be aware that sometimes our own responses, whether denial, anger or depression, are part of a cycle of psychological ‘healing’. Rather than ‘fight’ these emotions, we need to attempt to ‘work with them’ to get as quickly as possible to a state of acceptance and peace about wherever our journey is due to take us as a consequence of that fateful discussion that brings us the bad news, that at first is so difficult to accept.

As the great saying goes, ‘of time you would make a stream upon whose bank you would sit and watch its flowing, yet the timeless in you is aware of life’s timelessness, and knows that yesterday is but today’s memory and tomorrow is but today’s dream’. Perhaps an overt awareness of the inevitability of one’s death, and that one surely will receive bad news and have failures despite all one’s best efforts as part of the natural process of life and time passing, makes us appreciate more each day that ends well, and allows us to wake up at the start of each new day hopeful for its outcome, yet aware each day could bring some life changing negative event to us. All we can do is deal with the bad news if and when it comes, and eventually, with time and the Kubler-Ross cycles, accept it, even if we wish the river of life to pause or flow back, something which it surely can never do. The last words of General Stonewall Jackson, the superb Confederate military leader in the American Civil war, who died of pneumonia after being shot by his own men by mistake and losing his arm, were ‘Let us cross the river and rest in the shade of the trees on the other side’, words said apparently to his wife who had come to be by his side with a smile on his face. The prior life until we get that really bad news is surely like a flowing river or stream, which after the bad news arrives, becomes a raging sea. But this raging sea may be part of a planned accumulation of underlying currents, which enables one to get as quickly as possible, and eventually safely and calmly, to the other shore, wherever and whatever that far shore is or will be.

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