What happens to healthcare when everyone has a disease?
Large proportions of the populations of developed countries have a chronic disease and this is expected to increase steadily over the coming years as advances in healthcare keep more people alive for longer. Older people in particular are likely to have more than one diagnosis. It is not hard to imagine that very soon, the majority of people – certainly the majority of adults over 30 – will have a disease.
This is a problem, although not perhaps for the reasons that might first spring to mind.
I blame William Farr. Farr was a 19th century British doctor who took an interest in causes of death, arranged the marriage of statistics and medicine and kicked epidemiology into gear. The world has not been the same since, not least because Farr built the foundations for the systematic classification of diseases. This has turned the focus of healthcare from caring for ill-health (discomfort and impairment) to dealing with ‘disease’.
Disease is a concept that throughout history has been a product of efforts to explain and remedy ill-health. It is inextricably tied to prevailing concepts about the causes of ill-health and our ability to describe them – whether by invoking demons, curses, miasma, microbes, disturbances to energy flows or environmental toxins. Ill-health is a fact (or at least a phenomenon) but a disease is nothing more than an idea – the continually evolving nature of which is evidenced by the revision of the International Classification of Diseases (ICD) ten times in little more than 100 years.
And the ICD has grown each time it has been revised, from containing 139 disease entities in the late-19th century to 14,199 in 1990. Notwithstanding the fact that ill-health is experienced in a wide variety of ways, it is still remarkable that so many ideas are needed to describe and explain these experiences. It is perhaps even more remarkable that the more we seem to learn about health, the greater in number these explanatory ideas become; rather than converging on a comprehensive, efficient understanding of what sickness is all about, healthcare knowledge seems to be diverging into a universe of complexity. The number of ailments affecting people has not grown one hundred-fold in one hundred years – just the challenge that healthcare has brought upon itself.
With so many new labels on the rack, it is inevitable that more people than ever are being dressed for the healthcare ball. The problem is, a shortage of facilities means that they are all-dressed up but have nowhere to go.
And just as the latest cuts from Milan might not sit too well on the man who has only the local bar for a night on the town, these new diseases might not be fit well into an existing healthcare context that is optimised to handle acute illnesses.
The fundamental aim with acute illness is to achieve a cure, or at least a short-term remedy. Broadly, the logic of acute-illness treatment flows from presentation to diagnosis to intervention to discharge. This process will vary in duration but in all cases, it is essentially time-limited. Both patient and clinician have discharge in their sights and the healthcare system administrator would like this to occur as quickly as possible. The defining moment is when the clinician tells the patient that no further visits are required. The process is linear and limited.
On the other hand, the management of chronic illness, by definition incurable, is an indefinite process. The goals (enhance quality of life through maximising functioning, enhancing functional status, minimizing distress, and prolonging life through the prevention of acute exacerbations and complications) persist until the end of the patient’s life. They are never completed. Further visits are always required. The process is circular and indefinite. The sole end point is death.
In fitting people up with new diseases, healthcare has laced itself into its own strait-jacket and the water level is rising. It is desperately hoping that information technology, various system-management contortions and a variety of financial diets will enable some Houdini-like escape.
Perhaps they will conjure up some magic – or at least, create some room to move. But I think that a viable future for healthcare depends on a more radical re-visioning. Essentially, this involves a re-think of the values upon which healthcare systems are predicated.
First: Care is paramount. The role of healthcare first and foremost is to care for sick people. Yes, it’s a ‘Back To The Future’ scenario where healthcare practice comes out from behind healthcare technology. Its first priority is attending and bearing witness to the suffering of people who are unwell. The quality of the relationship between healthcare professional and patient is recognised as an essential platform upon which all healthcare interventions need to be built.
Second: Illness is recognised as being a defining part of humanity. It is normal to become unwell. Illness is to be managed, endured, survived – can even be ennobling and enlightening. People may involve professional health-carers but they accept that their illness is first and foremost their own problem, not that of the professional healthcare system.
Third: Quality of life is the justification of healthcare. Healthcare’s job is to help people have a better life, not necessarily a longer one.
Fourth: People claim ownership of their health. Healthcare is a standard life-skill that is learned and is practiced day-to-day, by ordinary people (i.e. not healthcare professionals) who are taking primary responsibility for their own health and well-being. Healthcare professionals are there to assist from time-to-time with their special knowledge and skills but the less involved they are in the day-to-day care of people’s health, the better. Healthcare is a social contract in which people have both a right to care and a responsibility to care.
Fifth: Chronic illness management is the core healthcare model. The healthcare system is optimised (structurally, conceptually, technologically) to deal with chronic illness. Acute conditions are treated as exceptions or ‘acute exacerbations’. Healthcare professionals are trained primarily in the care of people with chronic illnesses in primary-care or community-based care. Primary healthcare is recognised as the most complex and challenging arena of work, representing the intellectual and ‘technical’ pinnacle of professional healthcare.
This vision is not far out of reach. All of this happens every day to many people in many places – but it is not the dominant culture.
The next article will discuss challenges to achieving a culture-change that might bring this vision (or something like it) to the top.
 Devol, R., & Bedroussian, A. (2007). An Unhealthy America: The Economic Burden of Chronic Disease. Milken Institute, Santa Monica, California.
 Rhetorical device alert. I don’t really blame Farr. That would be silly.
 For an excellent, albeit challenging explanation of why diseases are nothing more than ideas, I recommend Kelly, M. P., & Moore, T. A. (2012). The judgement process in evidence-based medicine and health technology assessment. Social Theory & Health, 10(1), 1–19. doi:10.1057/sth.2011.21
 Knibbs, S. G. (2010). History of the development of the ICD. Retrieved April 19, 2013, from http://www.who.int/classifications/icd/en/HistoryOfICD.pdf