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The current approach to diabetes management is flawed. Providers’ use of the concepts of self-management and compliance disguises a system in which the perceptions and everyday life of the individual patient is discredited and disregarded. The result is the loss of both patients’ life quality and the wasting of billions of reimbursers’ dollars. This paper proposes a new direction in which providers move to change practice and acknowledge the equal importance of patients’ non-biomedical perception of diabetes in regards to cause, etiology and treatment initiatives. The paper argues that this change can potentially lead to a great improvement in the life expectancy and life quality of people with diabetes. It presents the outline of a practical model intended to assist providers in taking the first steps towards this crucial evolution in practice.1
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INTRODUCTION
Diabetes care is big business. This year alone, the total expenditure on diabetes and its complications will total more than 236 billions USD. 2 Similarly, the world market for insulin alone – prescribed for people with no or very limited self-production of insulin – is expected to be worth well over 11.8 billions USD in 2010 (Gale 2006: 1267). Regrettably not all of this money is well spent – in fact billions are wasted. Too many interventions are inadequately designed and executed, resulting in a poor efficiency of both public and private health care reimbursers’ spending.
To make matters worse the number of people with diabetes is increasing at a phenomenal rate. In 2030 more than 30 million Americans will have to live with diabetes, an increase from 17,702,000 Americans in 2000 (WHO estimate). 3 The increase will almost exclusively be seen in the rising number of people with type 2 diabetes – also known as adult onset diabetes. 4 Type 2 diabetes, which is the focus of this paper, already accounts for approximately 90% of all cases of diabetes and is largely the result of physical inactivity and excessive body weight (WHO)5. It is not only the ‘fat Americans’, as the European media so often depicts America, that are fighting a Sisyphus battle against diabetes. Diabetes is on the rise in every single country in the world, and by 2030 the global number of people living with diabetes is estimated to reach an astonishing 366.000.000 people – making it a ‘global diabetes epidemic’ (WHO).6
The economic burden of diabetes is vast even today. In the US a 1997 study showed that 10% of the total cost of health care was on diabetes and 25% of all Medicare payments where made to people with diabetes (Björk et al. 2000: 22). Improving the efficiency of intervention is critical if we want to ensure that the growing economic burden of caring for diabetes and its complications will not cause the health care sector to collapse.
However, of prime concern are the individuals living with diabetes that carry the burden. Diabetes is a chronic disease that occurs when the pancreas does not produce enough of the hormone insulin, or, alternatively, when the body cannot effectively use the produced insulin, hereby affecting the blood sugar levels that are controlled by insulin. An uncontrolled blood sugar level can either lead to raised levels of blood sugar (hyperglycemia) or lowered levels (hypoglycemia). This in turn can lead to a number of serious medical conditions. Diabetes is the leading cause of non-traumatic amputations and new cases of blindness in adults; it dramatically increases the risk of stroke; high blood pressure; central nervous system diseases; periodontal disease and depression (Center for Disease Control: 2002; WHO). 7 It goes without saying that this is a serious challenge to people’s quality of life and studies show that their life expectancy – often referred to as ‘life quantity’ – is cut by 10-15 years, even when treated (Björk et al. 2000: 22).
Encouragingly much can be done to minimize complications, but the paradox, according to providers, is that these measures are not being implemented to anywhere near the extent to which they could be. With strong scientific evidence backing this assertion and progress being in the interest of both patients, providers, reimburses and society at large the natural question then is to ask: What is the problem? – Why is the prevalence of complications not decreasing?’. 8 Attempting to address this apparent paradox has brought about an increased interest in the psycho-social aspects of how people live with diabetes (Schoenberg et al. 2005). It has also been the focus of several projects that I, and the company I work for, have been engaged in over the past 2 1/2 years. It is data and findings from these projects on type 2 diabetes that serve as the foundation of this paper.
SELF-MANAGEMENT
The proliferation of oral and injectable therapies has essentially placed the responsibility for achieving good control of diabetes on the person living with diabetes: Good control is defined as maintaining the right level of blood glucose (International Diabetes Federation). 9 This means the responsibility for both medical and non-medical treatment initiatives (i.e. dieting and exercising) lies in the private space of the person with diabetes. The health care system and its different actors have thereby become suppliers of products, services, information, guidance and evaluation to the patients, with providers prescribing medication and giving advice and directions on diet, exercise, stress management all for the patient to self-manage. To use the words of a nurse we interviewed in a project: “We don’t want to take over their diabetes, we want them to manage their own diabetes. We want to be the people that they can come to for advice”.
Providers and other actors within the health systems view this concept of self-management in an un-critical light, but deeper scrutiny is required if we are to understand the real impact of the concept. Rose (1992), highly influenced by the thinking of Michel Foucault, explicates that the modern understanding of the self, is indeed what could be labeled an enterprising self: “The enterprising self is [..] a self that calculates about itself and that works upon itself in order to better itself” (Rose 1992: 146). Foucault in his study of Greek and Roman philosophy has showed how working upon yourself with self-analysis and confession was considered integral to taking care of yourself, making management of the self an old western tradition (Foucault 1988; Samuelsen and Steffen 2004).
The life of the enterprising self is thus a continuous flow of situations in which it is attempting to choose what best serves its interests and self-improvement. It is through these choices that the enterprising self is at once creating and defining itself in the eyes of others and itself: ”The self is to style its life through acts of choice.” (Rose 1992: 151). The concept of the enterprising self hereby shows just how intrinsic choice-making is in our, western, understanding of what constitutes the individual as an acting subject (Foucault 1998, 2000; Rose 1992). It is because of this strong emphasis on the individual as an acting subject, that self-management is perceived as a self evident process whereby the individual living with diabetes will inevitably make decisions and take actions regarding treatment of diabetes that serves their own interest. Together with the assumption that treatment behaviour is a direct result of patients’ decision making this is an important part of providers’ perspectives on diabetes treatment (Hunt and Arar 2001: 348).
PROVIDERS’ AND PATIENTS’ DIFFERENT PERSPECTIVES ON DIABETES
Patients are generally taking it upon themselves to manage their diabetes. Equipped with medication, information and advice from providers on topics such as diet and exercise, they endeavor to find additional information and tools from the Internet, other patients and people within their social network (i.e. family, friends, the local minister etc.), hereby adding to the pool of what they consider relevant treatment initiatives. Patients generally consider more options than providers including such diverse initiatives as yoga, prayers, herbal tea and other medical options beyond those prescribed by their providers.
That patients and providers have different perspectives on diabetes is well-established (i.e. Balshem 1993; Mattingly 1998; Schoenberg et al.. 2005; Hunt and Arar 2005). I will therefore only give a few examples from one in a series of the projects we, in the company I work for, have conducted on type 2 diabetes. The project that took place in greater London involved twelve people living with type 2 diabetes, who we observed in their homes, with and without their families, at their jobs, shopping, picking up the kids from school and doing the many other things that ‘the everyday’ is comprised of.
Cause explanation – understanding the cause of my diabetes
We found that people have considerable knowledge of the medically accepted causes of diabetes, such as obesity, unhealthy diet and a sedentary lifestyle, but nevertheless most of the people we met in this and other studies have their own individual ‘cause explanation’. It is in these you find the difference between patients’ and providers’ notions of causality. We have found that while some people will refer to one of the medically accepted causes, they simultaneously explain how they also believe other causes, that do not find support from the medical establishment, were important triggers of their diabetes. Some patients exclusively attribute their diabetes to such causes. One patient, a man in his late fifties, explained how he got diabetes from eating large quantities of mango over the course of a summer.
Interviewer: So what caused your diabetes?
Informant: About seven years ago I got a big box of mango. So I was eating mango like nobodies business […]. I was going to the toilet many times, so I went to the doctor and the nurse, she tested my bloodsugar. And I was very high. And she was crazy; she said that I was going to die. […]. And she said straight away that it was diabetes.
In this and other studies we have encountered a vast array of cause explanations, their common trait being that all gave valuable insight into to how that person was living with diabetes, showing how ideas about the past and the present were influencing the patient’s understanding. They simultaneously manifested the uniqueness of their specific diabetic condition (Ferzacca 2000: 39). From a provider perspective, this serves to highlight the importance of listening to peoples’ cause explanations in order to understand their perspectives on diabetes, the key suggestion in the ‘narrative medicine’ proposed by Arthur Kleinman and many thereafter.
Management of diabetes – knowing how to live with diabetes
As already described, differences also show in relation to treatment initiatives. In some cases this is the result of a difference in understanding what is causing the diabetes, but we have also found that patients that have corresponding views to that of their providers will still enact treatment differently to what they have been advised. In the study a woman in her early sixties, knowledgeable about diabetes, and with an understanding of the causal factor aligned with the medical world skips part of her medication because she feels she doesn’t need it. Explaining her oral medication she said: “Then it went up to 500 twice a day, then it went up to 500 thrice a day, but I take it only twice a day” Or to give another example a woman, of the same age, skips her medication for a couple of days when she feels fine and her blood glucose measurement is ok.
Informant: I can, not take my medication for two days, and if tomorrow I test my blood sugar it might be 5.3.
Interviewer: So you don’t have to take you medication everyday?
Informant: No I don’t have to, because its controlled
Interviewer: What does the doctor say?
Informant: He tells me to take my medication everyday.
Actions such as these are considered highly illogical by health care professionals as she is actively endangering her long term health, but there was no doubt that she was fully aware of the potential long term complications of diabetes: She explained that her mother had died from diabetes and had a sister who had one of her legs amputated. “She got it bad”, as she said. These and similar examples illustrate how the same body can tell different stories to different people. Where providers see an ill body for which medication is intended to slow down the inevitable deterioration, the patient might feel fine and hence see limited need for medication.