‘Is it normal?’ A simple question that often lacks an easy answer

Anyone experiencing a change in bodily function must ask ‘is this normal or is it a manifestation of a serious disease’? Often the answer will be obvious, but not always; individuals may delay seeking medical advice until they believe their condition is ‘doctorable’, worthy of utilising a physician’s time. ¹ The problems are greatest at the extremes of age. First, any problems will arise in bodies that are anyway undergoing a series of often quite marked changes that are entirely normal. Young children experience marked changes in body size and shape and in the ability to do things, such as walk and control their bodily functions. Very old people may also experience changes, but in the opposite direction as they lose body mass from muscles and bones; they become unable to do things that once were easy, again including walking and controlling their bodily functions. Second, those at the extremes of age are also often dependent on others to recognise the changes to their bodies, to interpret them, and to determine which may require responses by health professionals and which are ‘normal’.

This is not always easy. Today, few parents are able to draw on the experience that they once accumulated when family sizes were much larger. Moreover, the emergence of the nuclear family and greater geographical mobility means that they are less likely to be able to draw on advice from grandparents or other relatives. At the other extreme of life there is often genuine uncertainty about whether the so-called degenerative diseases really do represent a dichotomy or lie on a continuum whereby accumulating genetic mutations or toxic exposures (such as cigarette smoke or unhealthy diets) act over long periods of time. ² Moreover, the combination of ageing populations and medical advances means that many more people have multiple medical disorders, each taking a complex combination of treatments that may never have been evaluated in people like them who are usually excluded from clinical trials. ³ Consequently, they, their carers and their health professionals must seek to differentiate not only ageing from illness but also from side-effects of treatment.

Mistakes in such complex situations can have serious consequences. One of the reasons suggested for the relatively poor cancer survival in the United Kingdom is the late presentation by individuals with warning signs and symptoms. ⁴ Similarly, mortality from acute illnesses in childhood is worse than in some other European countries, although in this case the problem may be compounded by poor recognition of the severity of illness by general practitioners with limited training in paediatrics. ⁵

The challenges involved became apparent to us when we studied communication between health professionals and parents of very young children with type 1 diabetes. We used a method termed conversation analysis (CA)^6,7 that seeks to understand how the participants construct a shared understanding. The parents were struggling to differentiate those signs and symptoms associated with normal child development from those specifically due to diabetes while the health professionals, with their much greater experience, found this much easier. ⁸ By comparing parents of newly diagnosed children and those with established diabetes we saw how, during consultations, parents demonstrated a duality of focus that combined the normal watchfulness exhibited by all parents who care for young children with an additional intense vigilance to detect early warnings of potentially serious manifestations of diabetes. In a demonstration of this parallel process, one family, concerned with their child’s unscheduled nap, asked themselves, ‘is it a sleep or is (s)he having a low?’ Another mother struggled to distinguish the emotional lability exhibited by most young children (the terrible twos) from central nervous system effects of hyper or hypoglycaemia. ⁸ We termed this process ‘parallel vigilance’ to reflect the way the two processes developed in parallel.

The failure fully to recognise this process was apparent in the interactions we observed. Parents and the clinicians came from quite different places, one with no knowledge of what to expect from diabetes and how to differentiate it from the often only slightly better understood process of normal development, while the other was highly experienced in the manifestations of childhood diabetes, to the extent that they assumed an unrealistic level of knowledge in the parents. The health professionals taking part in the conversations did progressively defer to the parents as they became expert in their child’s illness but it was apparent that they did not fully appreciate the challenges the parents faced in resolving these two issues. Yet when presented with our findings, those physicians involved in the research recognised these challenges and tell us that they have since changed their practice. ⁹

Our research with young children and their parents was conducted to inform paediatricians. Yet we believe that the same is likely to hold true in interactions between health professionals and older people and their carers. The professional would have seen many patients with similar problems. Sometimes they will know which process explains the patient’s signs and symptoms. Sometimes, when the patient experiences generalised frailty, they will be unable to disentangle them. However, they may not always realise just how the patient and their carers, who lack such experience, struggle to understand these interlinked but parallel processes but feel unable to display their lack of knowledge. Yet, by addressing this conundrum explicitly, professionals may help some patients or their carers to understand the complex relationships between their illnesses and the ageing process. We realise that many physicians have already incorporated this into their consultation style without thinking about it. Yet the limited research using CA to study consultations with older people, such as those undergoing rehabilitation following stroke, suggests that the interactions are extremely asymmetrical, ¹⁰ with health professionals paying little attention to the patient’s need for information.

In summary, those caring for people at the extremes of age will often have to ask, in respect to changes to the bodily structure or function of those they are caring for, ‘is it normal?’ The response by the health professional should, however, go beyond making a decision on a specific sign or symptom but should prompt a broader discussion about the parallel processes of, on the one hand, growth and ageing and, on the other hand, the natural history of any concomitant illnesses. Our research suggests that this is what carers really want to know.