‘Anchoring’ diabetes management into the everyday – the constant choice-making

The everyday management of diabetes is best understood as a series of ‘smaller’ decisions where diabetes related issues are considered together and against the many other, and sometimes-competing, non-diabetes related factors that people manage in their lives (Hunt and Arar 2001: 362). Looking at how people live with diabetes naturally highlights that their life is full of different factors that take time and require emotional and sometimes also economic investments. Regardless of whether patients do regard the advice and information given by their provider as the right thing to do, competing influencers such as children, partners, other family members, friends, work, sports and economic issues are some of the many other factors that people with diabetes are exposed to and obliged consider. This naturally affects the possibilities of following advice and directions.

In addition it is also important to highlight that most people, to a varying extent and with varying frequency, feel the need to manifest for themselves, and to others, that they are not defined by their diabetes which often results in behavior that is directly opposite to what providers advise as good sense. A man in his late fifties, who had quit alcohol because of providers advice, had no plans to “give up on” his breakfast eggs and butter: “I love my butter and eggs and I probably have about six eggs a week and half a pound of butter too….my nurse does not like that”.

However, most often we have found that patients will divert from the guidelines and direction given by providers for limited periods of time and show remorse. Feeling ‘ashamed’ or ‘guilty’ as informants called it, shows how the managing self, blames itself for any shortcomings. “I am naughty, I really am. I have been that for more than a month now”, as one of the informants said when talking about her diet. It also shows how patients come to internalize or appropriate perspectives from providers as part of their perspectives – even some that conflict with their own understandings. Showing that patient and provider practice are rarely that far apart as Ferzacca has pointed out (Ferzacca 2000: 29), but also leading to a situation in which patients are never far from ‘failure’ one way or the other.

Self-management as compliance

The differences in patients’ and providers’ perspectives lead to providers labeling patients’ perspectives and behaviors as irrational, foolish, lacking understanding of diabetes and presenting an obstacle to achieving good control of the patient’s diabetes. Providers use terms like non-compliance or non-adherence when patient perspective or behavior is in opposition to what they have been told by providers. However to providers self-management seems to be defined as complying with the treatment they have outlined. This overriding perspective ignores the vital consideration that patients will not always subscribe to the same logic and rationality as providers, rather naïvely disregards many other factors in the life of a person living with diabetes, and leaves the responsibility for patients’ lack of control to the patients themselves. Providers’ attempts to assist the patients in achieving control tends to take the form of ‘education’; giving rational arguments for the treatment regimen they have prescribed to the patient, and explaining how bad complications can become if they don’t comply with the regimen. This they say is in order to ‘get patients to realize the seriousness of the disease’ and motivate compliance. However, patients are in general well aware of the seriousness of the disease. It could therefore be concluded that providers’ efforts are somewhat misplaced (Hunt and Arar 2001: 362).

Providers intend patients to follow both medical and non-medical advice in an almost prescriptive way, which, they believe, will lead to good control. This validates the argument made by Trostle (1988) that providers’ education of patients and their call for ‘compliance’ and ‘adherence’ at its core represents a form of control over patients, in which patients are ‘blamed’ and ‘scared’ into cohesion (Trostle 1988). They fail to take into consideration the ‘reflection-in-action’ nature of patients’ decision making in which non-diabetes related goals are also weighed in on the anticipation of outcomes that guide their decision making or sensemaking, which I will prefer to call it, hereby disregarding the individual’s ability to make sense of real world situations (Mamykina and Mynatt 2007: 51).

The current deadlock

A troubling ramification of this is that patients and providers find themselves in a situation in which the concept of self-management is misused in an attempt to coerce the patient into following the treatment regimen outlined by providers with the noble goal of improving patients control. However the result is a situation where the reality of patients’ perspectives on, and life with, diabetes, is given inadequate consideration by providers when designing the treatment initiatives. This state of affairs has not led to substantial progress in the treatment of diabetes. It has resulted in unsatisfactory results for the individual, the health care providers, the health care reimburses and society at large with consequent detrimental human and economic costs.

GIVING VOICE TO THE PEOPLE LIVING WITH DIABETES

In order to break with the current “route” I suggest a new route where providers are helped to understand the perspective of each individual patient on diabetes and the factors that impact the way treatment is enacted. A route that acknowledges that the biomedical perspectives on cause, etiology and interventions are already effectively shaping diabetes treatment and that most power is vested in providers.

Striving to provide a simple way to ensure that patient perspectives and views are shared and respected, we have attempted to take into account the many different constraints and factors that providers face when caring for patients with diabetes. Limited time to spend for each consultation, economical constraints, guidelines and regulations from reimbursers and health authorities and economical incentives to focus their efforts on control all place demands on providers. With primary care providers becoming the main provider of diabetes care in many western countries patients will increasingly be met by generalists for whom diabetes is just one of many diseases that they tend to; providers who have a more traditional and ‘simple’ knowledge and approach to diabetes.¹⁰

Taking all these factors into consideration we have tried to make a simple model (see below), which providers should find relevant and easy to relate to. Using the model as a point of departure providers will be able to prompt talks with patients about the different key aspects of life with diabetes, and together with the patient decide what to focus on and how to best design treatment initiatives. It is centred around the idea that from diagnosis people with diabetes will embark on what we have called the ‘diabetes journey’.

I have already partly described three of the four aspects of the model, and will keep further description to a minimum.

• Accepting: How the individuals accept that their body is no longer producing the insulin needed, and hence intervention, either non-medical, medical or both, is needed. It is important to emphasize the dissimilarity to the ‘package deal’ thinking, that some providers seem to embrace when they use patients’ lack of acceptance of diabetes to explain unsatisfactory control levels. In our studies we have found several examples of patients that have accepted that they have diabetes, but will still not be in full compliance with the prescribed treatment regimen. As I have also attempted to illustrate in this paper there are many other reasons for not following the provider’s direction and advice. Thus I would argue for a more relevant use of the concept of acceptance.
• Understanding: Diabetes etiology and understanding the individual’s cause explanations. The principal function is to ensure that providers understand how the patient perceives their diabetes and to make sure that patients and providers discuss these issues together.
• Knowing: The knowledge people have about how to live life with diabetes. Focussing the attention of the provider and patient on discovery of the different treatment initiatives available, and the pros and cons of these. Revealing to providers that the palette of relevant interventions is much wider than the options they perceive.
• Anchoring: The actual employment of treatment initiatives into the everyday life of a person living with diabetes. The many different competing factors in a person’s life will be highlighted and included in patient’s and provider’s shared decision and sensemaking.

It has been portrayed and constructed as a journey because all of our projects have suggested that the four aspects follow each other in the proposed sequence. The journey structure suggests that these four aspects can be regarded as phases towards improved control levels, and that sustained successful control depends on a having addressed all four aspects in sequence. For example, trying to give advice and direction on anchoring to a patient without first endeavouring to ensure that you (as a provider) have fully understood their understanding of diabetes, and that the patient has fully acknowledged yours, would not be ideal. This finds support in theories on behavioural change such as the Transtheoretical Model, that argue a certain state of acceptance and understanding, and from this readiness for change, needs to be reached for knowledge and information to serve people effectively (Mamykina et al. 2006: 935). This understanding is also very well established among providers.

The underlying assumption is that providers and patients need to work together, because a provider trying to force the patient to a specific perspective or treatment intervention will only fail, and undermine their own future advice. Hence providers with the following attitude will be less successful: “The responsibility of the patient is to understand it as a kind of student/teacher relationship – that the patient is listening to the physician and understands what kind of illness he has, why we are going to treat it, and that they accept the insulin”, said by a general practitioner.

It is important to understand that the journey does not end with the patient becoming in control. Life constantly changes hereby influencing the ways by which you live with diabetes and for people with diabetes this among other things includes a gradual deterioration of their diabetes. Hence people might get in control for a period of time, followed by a setback with unsatisfactory control levels; following a cyclical process that seems to characterise changes of habits (Smith et al. 2006: 284). Therefore providers and patients should continuously engage in fresh discussion in order to ensure that the right interventions are chosen – hereby actively avoiding that provider and patient believe that they have finished discussing the aspects of accepting, understanding and knowing.

FUTURE PERSPECTIVE

The diabetes epidemic is reaching enormous proportions, and the importance of addressing the primary cause of this increase – the extreme rise in the number of overweight and obese people – is apparent. This however, should go hand in hand with an improved approach to diabetes management, hereby improving life quality and quantity through an increasing number of people with good HbA_1c levels, which should ultimately bring about enhanced spending practice.

The economic case for improved diabetes management is making itself ever clearer. Studies conducted by a Danish team of economists and medical scientists argue that the economic consequence of improving care from current Danish practice to one following national and international recommendation would be a 40% decrease in the total medical cost for diabetes (Green et al. 2006: 9)¹¹. In the US – the team argues that their findings would apply to most western countries – the savings in 2002 would have amounted to approximately 40 billion USD. ¹² However the problem of identifying the most successful and cost effective interventions to get there remains.

The presented model can serve as the overall framework for how to identify the right interventions. It is still a work in progress; the model will necessarily evolve to incorporate further adjustments and corrections, which is already taking place in a cooperative effort with our client, but it has been supported by research conducted by the client and by a recent project that focused on the training of doctors and nurses in primary health care to better understand and act on the ‘psycho-social’ aspects of diabetes. This training resulted in lowered control level among their patients. ¹³ Hence, despite the need to hone the model, I would not hesitate to assert that the premises on which it is founded are correct: That there is a need for a new direction in diabetes management, a change in which the patients’ perspectives on diabetes and their everyday sensemaking is taken into unprecedented consideration. A mode where compliance or non-compliance disappear as the organizing principles substituted for a mode where real acceptance of the patients’ perspectives and ideas paves the way for self-management in its true sense, where providers together with patients choose the right treatment interventions to achieve good control.

The model essentially presents a framework for understanding and for the design of interventions. At macro level it gives decision makers a better understanding of the issues that are the most prevalent and significant, and most importantly how to address them. At micro level it frames the use of current detailed treatment guidelines, questionnaires and interventions available for providers in guiding their decision-making on appropriate interventions or how to design new and more efficient tools, hereby giving them a better understanding of how to best serve the need of the patient on the other side of the table.

If the lives of millions of people living with diabetes are to be truly changed for the better, it is paramount that numerous concrete and practical interventions are designed. I would argue that the presented model may represent a good point of departure, and that anthropological and ethnographical work can make a difference here, by providing a deeper understanding of the experiences of people with diabetes while doing this in a manner with optimal operational relevance for providers. It is not until we have fundamentally changed the health care system that diabetes care can be changed for good to the benefit of people living with diabetes.

Mikkel Brok-Kristensen is a senior consultant at ReD Associates, Copenhagen. He primarily works on projects within the field of medical anthropology, with a current focus primarily on the lives of people living with diabetes and their interactions with the health care system.

Ethnographic Praxis in Industry Conference Proceedings 2007, pp. 91–103. © American Anthropological Association, some rights reserved.