type 2 diabetes complex care needs essay

Developing a Plan of Care for a Patient with Type 2 Diabetes and Hypertension

Write a 3,000 word care study critically examining the needs and evidence-based care for individuals with complex and co-existing health and social care problems in a range of environments, using the NHS as a reference.

Added on   2023-04-23

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Dietary and nutritional approaches for prevention and management of type 2 diabetes

Food for thought, click here to read other articles in this collection.

• Related content
• Peer review
• Nita G Forouhi , professor 1 ,
• Anoop Misra , professor 2 ,
• Viswanathan Mohan , professor 3 ,
• Roy Taylor , professor 4 ,
• William Yancy , director 5 6 7
• 1 MRC Epidemiology Unit, University of Cambridge School of Clinical Medicine, Cambridge, UK
• 2 Fortis-C-DOC Centre of Excellence for Diabetes, Metabolic Diseases and Endocrinology, and National Diabetes, Obesity and Cholesterol Foundation, New Delhi, India
• 3 Dr Mohan’s Diabetes Specialities Centre and Madras Diabetes Research Foundation, Chennai, India
• 4 Magnetic Resonance Centre, Institute of Cellular Medicine, Newcastle University, Newcastle, UK
• 5 Duke University Diet and Fitness Center, Durham, North Carolina, USA
• 6 Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA
• 7 Center for Health Services Research in Primary Care, Department of Veterans Affairs, Durham, North Carolina, USA
• Correspondence to: N G Forouhi nita.forouhi{at}mrc-epid.cam.ac.uk

Common ground on dietary approaches for the prevention, management, and potential remission of type 2 diabetes can be found, argue Nita G Forouhi and colleagues

Dietary factors are of paramount importance in the management and prevention of type 2 diabetes. Despite progress in formulating evidence based dietary guidance, controversy and confusion remain. In this article, we examine the evidence for areas of consensus as well as ongoing uncertainty or controversy about dietary guidelines for type 2 diabetes. What is the best dietary approach? Is it possible to achieve remission of type 2 diabetes with lifestyle behaviour changes or is it inevitably a condition causing progressive health decline? We also examine the influence of nutrition transition and population specific factors in the global context and discuss future directions for effective dietary and nutritional approaches to manage type 2 diabetes and their implementation.

Why dietary management matters but is difficult to implement

Diabetes is one of the biggest global public health problems: the prevalence is estimated to increase from 425 million people in 2017 to 629 million by 2045, with linked health, social, and economic costs. 1 Urgent solutions for slowing, or even reversing, this trend are needed, especially from investment in modifiable factors including diet, physical activity, and weight. Diet is a leading contributor to morbidity and mortality worldwide according to the Global Burden of Disease Study carried out in 188 countries. 2 The importance of nutrition in the management and prevention of type 2 diabetes through its effect on weight and metabolic control is clear. However, nutrition is also one of the most controversial and difficult aspects of the management of type 2 diabetes.

The idea of being on a “diet” for a chronic lifelong condition like diabetes is enough to put many people off as knowing what to eat and maintaining an optimal eating pattern are challenging. Medical nutrition therapy was introduced to guide a systematic and evidence based approach to the management of diabetes through diet, and its effectiveness has been demonstrated, 3 but difficulties remain. Although most diabetes guidelines recommend starting pharmacotherapy only after first making nutritional and physical activity lifestyle changes, this is not always followed in practice globally. Most physicians are not trained in nutrition interventions and this is a barrier to counselling patients. 4 5 Moreover, talking to patients about nutrition is time consuming. In many settings, outside of specialised diabetes centres where trained nutritionists/educators are available, advice on nutrition for diabetes is, at best, a printed menu given to the patient. In resource poor settings, when type 2 diabetes is diagnosed, often the patient leaves the clinic with a list of new medications and little else. There is wide variation in the use of dietary modification alone to manage type 2 diabetes: for instance, estimates of fewer than 5-10% of patients with type 2 diabetes in India 6 and 31% in the UK are reported, although patients treated by lifestyle measures may be less closely managed than patients on medication for type 2 diabetes. 7 Although systems are usually in place to record and monitor process measures for diabetes care in medical records, dietary information is often neglected, even though at least modest attention to diet is needed to achieve adequate glycaemic control. Family doctors and hospital clinics should collect this information routinely but how to do this is a challenge. 5 8

Progress has been made in understanding the best dietary advice for diabetes but broader problems exist. For instance, increasing vegetable and fruit intake is recommended by most dietary guidelines but their cost is prohibitively high in many settings: the cost of two servings of fruits and three servings of vegetables a day per individual (to fulfil the “5-a-day” guidance) accounted for 52%, 18%, 16%, and 2% of household income in low, low to middle, upper to middle, and high income countries, respectively. 9 An expensive market of foods labelled for use by people with diabetes also exists, with products often being no healthier, and sometimes less healthy, than regular foods. After new European Union legislation, food regulations in some countries, including the UK, were updated as recently as July 2016 to ban such misleading labels. This is not the case elsewhere, however, and what will happen to such regulation after the UK leaves the European Union is unclear, which highlights the importance of the political environment.

Evidence for current dietary guidelines

In some, mostly developed, countries, dietary guidelines for the management of diabetes have evolved from a focus on a low fat diet to the recognition that more important considerations are macronutrient quality (that is, the type versus the quantity of macronutrient), avoidance of processed foods (particularly processed starches and sugars), and overall dietary patterns. Many systematic reviews and national dietary guidelines have evaluated the evidence for optimal dietary advice, and we will not repeat the evidence review. 10 11 12 13 14 15 16 17 18 We focus instead in the following sections on some important principles where broad consensus exists in the scientific and clinical community and highlight areas of uncertainty, but we begin by outlining three underpinning features.

Firstly, an understanding of healthy eating for the prevention and management of type 2 diabetes has largely been derived from long term prospective studies and limited evidence from randomised controlled trials in general populations, supplemented by evidence from people with type 2 diabetes. Many published guidelines and reviews have applied grading criteria and this evidence is often of moderate quality in the hierarchy of evidence that places randomised controlled trials at the top. Elsewhere, it is argued that different forms of evidence evaluating consistency across multiple study designs including large population based prospective studies of clinical endpoints, controlled trials of intermediate pathways, and where feasible randomised trials of clinical endpoints should be used collectively for evidence based nutritional guidance. 19

Secondly, it is now recognised that dietary advice for both the prevention and management of type 2 diabetes should converge, and they should not be treated as different entities ( fig 1 ). However, in those with type 2 diabetes, the degree of glycaemic control and type and dose of diabetes medication should be coordinated with dietary intake. 12 With some dietary interventions, such as very low calorie or low carbohydrate diets, people with diabetes would usually stop or reduce their diabetes medication and be monitored closely, as reviewed in a later section.

Dietary advice for different populations for the prevention and management of type 2 diabetes

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Thirdly, while recognising the importance of diet for weight management, there is now greater understanding 10 of the multiple pathways through which dietary factors exert health effects through both obesity dependent and obesity independent mechanisms. The influence of diet on weight, glycaemia, and glucose-insulin homeostasis is directly relevant to glycaemic control in diabetes, while other outcomes such as cardiovascular complications are further influenced by the effect of diet on blood lipids, apolipoproteins, blood pressure, endothelial function, thrombosis, coagulation, systemic inflammation, and vascular adhesion. The effect of food and nutrients on the gut microbiome may also be relevant to the pathogenesis of diabetes but further research is needed. Therefore, diet quality and quantity over the longer term are relevant to the prevention and management of diabetes and its complications through a wide range of metabolic and physiological processes.

Areas of consensus in guidelines

Weight management.

Type 2 diabetes is most commonly associated with overweight or obesity and insulin resistance. Therefore, reducing weight and maintaining a healthy weight is a core part of clinical management. Weight loss is also linked to improvements in glycaemia, blood pressure, and lipids and hence can delay or prevent complications, particularly cardiovascular events.

Energy balance

Most guidelines recommend promoting weight loss among overweight or obese individuals by reducing energy intake. Portion control is one strategy to limit energy intake together with a healthy eating pattern that focuses on a diet composed of whole or unprocessed foods combined with physical activity and ongoing support.

Dietary patterns

The evidence points to promoting patterns of food intake that are high in vegetables, fruit, whole grains, legumes, nuts, and dairy products such as yoghurt but with some cautions. Firstly, some dietary approaches (eg, low carbohydrate diets) recommend restricting the intake of fruits, whole grains, and legumes because of their sugar or starch content. For fruit intake, particularly among those with diabetes, opinion is divided among scientists and clinicians (see appendix on bmj.com). Many guidelines continue to recommend fruit, however, on the basis that fructose intake from fruits is preferable to isocaloric intake of sucrose or starch because of the additional micronutrient, phytochemical, and fibre content of fruit. Secondly, despite evidence from randomised controlled trials and prospective studies 10 that nuts may help prevent type 2 diabetes, some (potentially misplaced) concern exists about their high energy content. Further research in people with type 2 diabetes should help to clarify this.

There is also consensus on the benefits of certain named dietary patterns such as the Mediterranean diet for prevention and management of type 2 diabetes. Expert guidelines also support other healthy eating patterns that take account of local sociocultural factors and personal preferences.

Foods to avoid

Consensus exists on reducing or avoiding the intake of processed red meats, refined grains and sugars (especially sugar sweetened drinks) both for prevention and management of type 2 diabetes, again with some cautions. Firstly, for unprocessed red meat, the evidence of possible harm because of the development of type 2 diabetes is less consistent and of a smaller magnitude. More research is needed on specific benefits or harms in people with type 2 diabetes. Secondly, evidence is increasing on the relevance of carbohydrate quality: that is that whole grains and fibre are better choices than refined grains and that fibre intake should be at least as high in people with type 2 diabetes as recommended for the general population, that diets that have a higher glycaemic index and load are associated with an increased risk of type 2 diabetes, and that there is a modest glycaemic benefit in replacing foods with higher glycaemic load with foods with low glycaemic load. However, debate continues about the independence of these effects from the intake of dietary fibre. Some evidence exists that consumption of potato and white rice may increase the risk of type 2 diabetes but this is limited and further research is needed.

Moreover, many guidelines also highlight the importance of reducing the intake of in foods high in sodium and trans fat because of the relevance of these specifically for cardiovascular health.

Areas of uncertainty in guidelines

Optimal macronutrient composition.

One of the most contentious issues about the management of type 2 diabetes has been on the best macronutrient composition of the diet. Some guidelines continue to advise macronutrient quantity goals, such as the European or Canadian recommendation of 45–60% of total energy as carbohydrate, 10–20% as protein, and less than 35% as fat, 13 20 or the Indian guidelines that recommend 50-60% energy from carbohydrates, 10-15% from protein, and less than 30% from fat. 21 In contrast, the most recent nutritional guideline from the American Diabetes Association concluded that there is no ideal mix of macronutrients for all people with diabetes and recommended individually tailored goals. 12 Alternatively, a low carbohydrate diet for weight and glycaemic control has gained popularity among some experts, clinicians, and the public (reviewed in a later section). Others conclude that a low carbohydrate diet combined with low saturated fat intake is best. 22

For weight loss, three points are noteworthy when comparing dietary macronutrient composition. Firstly, evidence from trials points to potentially greater benefits from a low carbohydrate than a low fat diet but the difference in weight loss between diets is modest. 23 Secondly, a comparison of named diet programmes with different macronutrient composition highlighted that the critical factor in effectiveness for weight loss was the level of adherence to the diet over time. 24 Thirdly, the quality of the diet in low carbohydrate or low fat diets is important. 25 26

Research to date on weight or metabolic outcomes in diabetes is complicated by the use of different definitions for the different macronutrient approaches. For instance, the definition of a low carbohydrate diet has ranged from 4% of daily energy intake from carbohydrates (promoting nutritional ketosis) to 40%. 15 Similarly, low fat diets have been defined as fat intake less than 30% of daily energy intake or substantially lower. Given these limitations, the best current approach may be an emphasis on the use of individual assessment for dietary advice and a focus on the pattern of eating that most readily allows the individual to limit calorie intake and improve macronutrient quality (such as avoiding refined carbohydrates).

Regular fish intake of at least two servings a week, including one serving of oily fish (eg, salmon, mackerel, and trout) is recommended for cardiovascular risk prevention but fish intake has different associations with the risk of developing type 2 diabetes across the world—an inverse association, no association, and a positive association. 27 It is thought that the type of fish consumed, preparation or cooking practices, and possible contaminants (eg, methyl mercury and polychlorinated biphenyls) vary by geographical location and contributed to this heterogeneity. More research is needed to resolve whether fish intake should be recommended for the prevention of diabetes. However, the current evidence supports an increase in consumption of oily fish for individuals with diabetes because of its beneficial effects on lipoproteins and prevention of coronary heart disease. Most guidelines agree that omega 3 polyunsaturated fatty acid (fish oil) supplementation for cardiovascular prevention in people with diabetes should not be recommended but more research is needed and the results of the ASCEND (A Study of Cardiovascular Events in Diabetes) trial should help to clarify this. 28

Dairy foods are encouraged for the prevention of type 2 diabetes, with more consistent evidence of the benefits of fermented dairy products, such as yoghurt. Similar to population level recommendations about limiting the intake of foods high in saturated fats and replacing them with foods rich in polyunsaturated fat, the current advice for diabetes also favours low fat dairy products but this is debated. More research is needed to resolve this question.

Uncertainty continues about certain plant oils and tropical oils such as coconut or palm oil as evidence from prospective studies or randomised controlled trials on clinical events is sparse or non-existent. However, olive oil, particularly extra virgin olive oil, has been studied in greater detail with evidence of potential benefits for the prevention and management of type 2 diabetes 29 and the prevention of cardiovascular disease within the context of a Mediterranean diet 30 (see article in this series on dietary fats). 31

Difficulties in setting guidelines

Where dietary guidelines exist (in many settings there are none, or they are adapted from those in developed countries and therefore may not be applicable to the local situation), they vary substantially in whether they are evidence based or opinion pieces, and updated in line with scientific progress or outdated. Their accessibility—both physical availability (eg, through a website or clinic) and comprehensibility— for patients and healthcare professionals varies. They vary also in scope, content, detail, and emphasis on the importance of individualised dietary advice, areas of controversy, and further research needs. The quality of research that informs dietary guidelines also needs greater investment from the scientific community and funders. Moreover, lack of transparency in the development of guidelines and bias in the primary nutritional studies can undermine the development of reliable dietary guidelines; recommendations for their improvement must be heeded. 32

Reversing type 2 diabetes through diet

Type 2 diabetes was once thought to be irreversible and progressive after diagnosis, but much interest has arisen about the potential for remission. Consensus on the definition of remission is a sign of progress: glucose levels lower than the diagnostic level for diabetes in the absence of medications for hyperglycaemia for a period of time (often proposed to be at least one year). 33 34 However, the predominant role of energy deficit versus macronutrient composition of the diet in achieving remission is still controversial.

Remission through a low calorie energy deficit diet

Although the clinical observation of the lifelong, steadily progressive nature of type 2 diabetes was confirmed by the UK Prospective Diabetes Study, 35 rapid normalisation of fasting plasma glucose after bariatric surgery suggested that deterioration was not inevitable. 36 As the main change was one of sudden calorie restriction, a low calorie diet was used as a tool to study the mechanisms involved. In one study of patients with type 2 diabetes, fasting plasma glucose normalised within seven days of following a low calorie diet. 37 This normalisation through diet occurred despite simultaneous withdrawal of metformin therapy. Gradually over eight weeks, glucose stimulated insulin secretion returned to normal. 37 Was this a consequence of calorie restriction or composition of the diet? To achieve the degree of weight loss obtained (15 kg), about 610 kcal a day was provided—510 kcal as a liquid formula diet and about 100 kcal as non-starchy vegetables. The formula diet consisted of 59 g of carbohydrate (30 g as sugars), 11.4 g of fat, and 41 g of protein, including required vitamins and minerals. This high “sugar” approach to controlling blood glucose may be surprising but the critical aspect is not what is eaten but the gap between energy required and taken in. Because of this deficit, the body must use previously stored energy. Intrahepatic fat is used first, and the 30% decrease in hepatic fat in the first seven days appears sufficient to normalise the insulin sensitivity of the liver. 37 In addition, pancreatic fat content fell over eight weeks and beta cell function improved. This is because insulin secretory function was regained by re-differentiation after fat removal. 38

The permanence of these changes was tested by a nutritional and behavioural approach to achieve long term isocaloric eating after the acute weight loss phase. 39 It was successful in keeping weight steady over the next six months of the study. Calorie restriction was associated with both hepatic and pancreatic fat content remaining at the low levels achieved. The initial remission of type 2 diabetes was closely associated with duration of diabetes, and the individuals with type 2 diabetes of shorter duration who achieved normal levels of blood glucose maintained normal physiology during the six month follow-up period. Recently, 46% of a UK primary care cohort remained free of diabetes at one year during a structured low calorie weight loss programme (the DiRECT trial). 40 These results are convincing, and four years of follow-up are planned.

A common criticism of the energy deficit research has been that very low calorie diets may not be achievable or sustainable. Indeed, adherence to most diets in the longer term is an important challenge. 24 However, Look-AHEAD, the largest randomised study of lifestyle interventions in type 2 diabetes (n=5145), randomised individuals to intensive lifestyle management, including the goal to reduce total calorie intake to 1200-1800 kcal/d through a low fat diet assisted by liquid meal replacements, and this approach achieved greater weight loss and non-diabetic blood glucose levels at year 1 and year 4 in the intervention than the control group. 41

Considerable interest has arisen about whether low calorie diets associated with diabetes remission can also help to prevent diabetic complications. Evidence is sparse because of the lack of long term follow-up studies but the existing research is promising. A return to the non-diabetic state brings an improvement in cardiovascular risk (Q risk decreasing from 19.8% to 5.4%) 39 ; case reports of individuals facing foot amputation record a return to a low risk state over 2-4 years with resolution of painful neuropathy 42 43 ; and retinal complications are unlikely to occur or progress. 44 However, other evidence highlights that worsening of treatable maculopathy or proliferative retinopathy may occur following a sudden fall in plasma glucose levels, 45 46 so retinal imaging in 4-6 months is recommended for individuals with more than minimal retinopathy if following a low calorie remission diet. Annual review is recommended for all those in the post-diabetic state, and a “diabetes in remission” code (C10P) is now available in the UK. 34

Management or remission through a low carbohydrate diet

Before insulin was developed as a therapy, reducing carbohydrate intake was the main treatment for diabetes. 47 48 Carbohydrate restriction for the treatment of type 2 diabetes has been an area of intense interest because, of all the macronutrients, carbohydrates have the greatest effect on blood glucose and insulin levels. 49

In a review by the American Diabetes Association, interventions of low carbohydrate (less than 40% of calories) diets published from 2001 to 2010 were identified. 15 Of 11 trials, eight were randomised and about half reported greater improvement in HbA1c on the low carbohydrate diet than the comparison diet (usually a low fat diet), and a greater reduction in the use of medicines to lower glucose. Notably, calorie reduction coincided with carbohydrate restriction in many of the studies, even though it was not often specified in the dietary counselling. One of the more highly controlled studies was an inpatient feeding study, 50 which reported a decline in mean HbA1c from 7.3% to 6.8% (P=0.006) over just 14 days on a low carbohydrate diet.

For glycaemia, other reviews of evidence from randomised trials on people with type 2 diabetes have varying conclusions. 51 52 53 54 55 56 Some concluded that low carbohydrate diets were superior to other diets for glycaemic control, or that a dose response relationship existed, with stricter low carbohydrate restriction resulting in greater reductions in glycaemia. Others cautioned about short term beneficial effects not being sustained in the longer term, or found no overall advantage over the comparison diet. Narrative reviews have generally been more emphatic on the benefits of low carbohydrate diets, including increased satiety, and highlight the advantages for weight loss and metabolic parameters. 57 58 More recently, a one year clinic based study of the low carbohydrate diet designed to induce nutritional ketosis (usually with carbohydrate intake less than 30 g/d) was effective for weight loss, and for glycaemic control and medication reduction. 59 However, the study was not randomised, treatment intensity differed substantially in the intervention versus usual care groups, and participants were able to select their group.

Concerns about potential detrimental effects on cardiovascular health have been raised as low carbohydrate diets are usually high in dietary fat, including saturated fat. For lipid markers as predictors of future cardiovascular events, several studies found greater improvements in high density lipoprotein cholesterol and triglycerides with no relative worsening of low density lipoprotein cholesterol in patients with type 2 diabetes following carbohydrate restriction, 15 with similar conclusions in non-diabetic populations. 57 60 61 62 Low density lipoprotein cholesterol tends to decline more, however, in a low fat comparison diet 61 63 and although low density lipoprotein cholesterol may not worsen with a low carbohydrate diet 63 in the short term, the longer term effects are unclear. Evidence shows that low carbohydrate intake can lower the more atherogenic small, dense low density lipoprotein particles. 57 64 Because some individuals may experience an increase in serum low density lipoprotein cholesterol when following a low carbohydrate diet high in saturated fat, monitoring is important.

Another concern is the effect of the potentially higher protein content of low carbohydrate diets on renal function. Evidence from patients with type 2 diabetes with normal baseline renal function and from individuals without diabetes and with normal or mildly impaired renal function has not shown worsening renal function at one or up to two years of follow-up, respectively. 22 65 66 67 Research in patients with more severely impaired renal function, with or without diabetes, has not been reported to our knowledge. Other potential side effects of a very low carbohydrate diet include headache, fatigue, and muscle cramping but these side effects can be avoided by adequate fluid and sodium intake, particularly in the first week or two after starting the diet when diuresis is greatest. Concern about urinary calcium loss and a possible contribution to increased future risk of kidney stones or osteoporosis 68 have not been verified 69 but evidence is sparse and warrants further investigation. The long term effects on cardiovascular disease and chronic kidney disease in patients with diabetes need further evaluation.

Given the hypoglycaemic effect of carbohydrate restriction, patients with diabetes who adopt low carbohydrate diets and their clinicians must understand how to avoid hypoglycaemia by appropriately reducing glucose lowering medications. Finally, low carbohydrate diets can restrict whole grain intake and although some low carbohydrate foods can provide the fibre and micronutrients contained in grains, it may require greater effort to incorporate such foods. This has led some experts to emphasise restricting refined starches and sugars but retaining whole grains.

Nutrition transition and population specific factors

Several countries in sub-Saharan Africa, South America, and Asia (eg, India and China) have undergone rapid nutrition transition in the past two decades. These changes have paralleled economic growth, foreign investment in the fast food industry, urbanisation, direct-to-consumer marketing of foods high in calories, sale of ultraprocessed foods, and as a result, lower consumption of traditional diets. The effect of these factors on nutrition have led to obesity and type 2 diabetes on the one hand, and co-existing undernutrition and micronutrient deficiencies on the other.

Dietary shifts in low and middle income countries have been stark: in India, these include a substantial increase in fat intake in the setting of an already high carbohydrate intake, with a slight increase in total energy and protein, 70 and a decreasing intake of coarse cereals, pulses, fruits, and vegetables 71 ; in China, animal protein and fat as a percentage of energy has also increased, while cereal intake has decreased. 72 An almost universal increase in the intake of caloric beverages has also occurred, with sugar sweetened soda drinks being the main beverage contributing to energy intake, for example among adults and children in Mexico, 73 or the substantial rise in China in sales of sugar sweetened drinks from 10.2 L per capita in 1998 to 55.0 L per capita in 2012. 74 The movement of populations from rural to urban areas within a country may also be linked with shifts in diets to more unhealthy patterns, 75 while acculturation of immigrant populations into their host countries also results in dietary shifts. 76

In some populations, such as South Asians, rice and wheat flour bread are staple foods, with a related high carbohydrate intake (60-70% of calories). 77 Although time trends show that intake of carbohydrate has decreased among South Asian Indians, the quality of carbohydrates has shifted towards use of refined carbohydrates. 71 The use of oils and traditional cooking practices also have specific patterns in different populations. For instance, in India, the import and consumption of palm oil, often incorporated in the popular oil vanaspati (partially hydrogenated vegetable oil, high in trans fats), is high. 78 Moreover, the traditional Indian cooking practice of frying at high temperatures and re-heating increases trans fatty acids in oils. 79 Such oils are low cost, readily available, and have a long shelf life, and thus are more attractive to people from the middle and low socioeconomic strata but their long term effects on type 2 diabetes are unknown.

Despite the nutrition transition being linked to an increasing prevalence of type 2 diabetes, obesity and other non-communicable diseases, strong measures to limit harmful foods are not in place in many countries. Regulatory frameworks including fiscal policies such as taxation for sugar sweetened beverages need to be strengthened to be effective and other preventive interventions need to be properly implemented. Efforts to control trans fatty acids in foods have gained momentum but are largely confined to developed countries. To reduce consumption in low and middle income countries will require both stringent regulations and the availability and development of alternative choices of healthy and low cost oils, ready made food products, and consumer education. 80 The need for nutritional labelling is important but understanding nutrition labels is a problem in populations with low literacy or nutrition awareness, which highlights the need for educational activities and simpler forms of labelling. The role of dietary/nutritional factors in the predisposition of some ethnic groups to developing type 2 diabetes at substantially lower levels of obesity than European populations 81 is poorly researched and needs investigation.

Despite the challenges of nutritional research, considerable progress has been made in formulating evidence based dietary guidance and some common principles can be agreed that should be helpful to clinicians, patients, and the public. Several areas of uncertainty and controversy remain and further research is needed to resolve these. While adherence to dietary advice is an important challenge, weight management is still a cornerstone in diabetes management, supplemented with new developments, including the potential for the remission of type 2 diabetes through diet.

Future directions

Nutritional research is difficult. Although much progress has been made to improve evidence based dietary guidelines, more investment is needed in good quality research with a greater focus on overcoming the limitations of existing research. Experts should also strive to build consensus using research evidence based on a combination of different study designs, including randomised experiments and prospective observational studies

High quality research is needed that compares calorie restriction and carbohydrate restriction to assess effectiveness and feasibility in the long term. Consensus is needed on definitions of low carbohydrate nutrition. Use of the findings must take account of individual preferences, whole diets, and eating patterns

Further research is needed to resolve areas of uncertainty about dietary advice in diabetes, including the role of nuts, fruits, legumes, fish, plant oils, low fat versus high fat dairy, and diet quantity and quality

Given recent widespread recommendations (such as from the World Health Organization 82 and the UK Scientific Advisory Committee on Nutrition 83 ) to reduce free sugars to under 10% or even 5% of total energy intake in the general population and to avoid sugar sweetened drinks, we need targeted research on the effect of non-nutritive sweeteners on health outcomes in people with diabetes and in the whole population

Most dietary guidelines are derived from evidence from Western countries. Research is needed to better understand the specific aetiological factors that link diet/nutrition and diabetes and its complications in different regions and different ethnic groups. This requires investment in developing prospective cohorts and building capacity to undertake research in low and middle income settings and in immigrant ethnic groups. Up-to-date, evidence based dietary guidelines are needed that are locally relevant and readily accessible to healthcare professionals, patients, and the public in different regions of the world. Greater understanding is also needed about the dietary determinants of type 2 diabetes and its complications at younger ages and in those with lower body mass index in some ethnic groups

We need investment in medical education to train medical students and physicians in lifestyle interventions, including incorporating nutrition education in medical curricula

Individual, collective, and upstream factors are important. Issuing dietary guidance does not ensure its adoption or implementation. Research is needed to understand the individual and societal drivers of and barriers to healthy eating. Educating and empowering individuals to make better dietary choices is an important strategy; in particular, the social aspects of eating need attention as most people eat in family or social groups and counselling needs to take this into account. Equally important is tackling the wider determinants of individual behaviour—the “foodscape”, sociocultural and political factors, globalisation, and nutrition transition

Key messages

Considerable evidence supports a common set of dietary approaches for the prevention and management of type 2 diabetes, but uncertainties remain

Weight management is a cornerstone of metabolic health but diet quality is also important

Low carbohydrate diets as the preferred choice in type 2 diabetes is controversial. Some guidelines maintain that no single ideal percentage distribution of calories from different macronutrients (carbohydrates, fat, or protein) exists, but there are calls to review this in light of emerging evidence on the potential benefits of low carbohydrate diets for weight management and glycaemic control

The quality of carbohydrates such as refined versus whole grain sources is important and should not get lost in the debate on quantity

Recognition is increasing that the focus of dietary advice should be on foods and healthy eating patterns rather than on nutrients. Evidence supports avoiding processed foods, refined grains, processed red meats, and sugar sweetened drinks and promoting the intake of fibre, vegetables, and yoghurt. Dietary advice should be individually tailored and take into account personal, cultural, and social factors

An exciting recent development is the understanding that type 2 diabetes does not have to be a progressive condition but instead there is potential for remission with dietary intervention

Acknowledgments

We thank Sue Brown as a patient representative of Diabetes UK for her helpful comments and insight into this article.

Contributors and sources: The authors have experience and research interests in the prevention and management of type 2 diabetes (NGF, AM, VM, RT, WY), in guideline development (NGF, AM, VM, WY), and in nutritional epidemiology (NGF, VM). Sources of information for this article included published dietary guidelines or medical nutrition therapy guidelines for diabetes, and systematic reviews and primary research articles based on randomised clinical trials or prospective observational studies. All authors contributed to drafting this manuscript, with NGF taking a lead role and she is also the guarantor of the manuscript. All authors gave intellectual input to improve the manuscript and have read and approved the final version.

Competing interests: We have read and understood BMJ policy on declaration of interests and declare the following: NGF receives funding from the Medical Research Council Epidemiology Unit (MC_UU_12015/5). NGF is a member (unpaid) of the Joint SACN/NHS-England/Diabetes-UK Working Group to review the evidence on lower carbohydrate diets compared with current government advice for adults with type 2 diabetes and is a member (unpaid) of ILSI-Europe Qualitative Fat Intake Task Force Expert Group on update on health effects of different saturated fats. AM received honorarium and research funding from Herbalife and Almond Board of California. VM has received funding from Abbott Health Care for meal replacement studies, the Cashew Export Promotion Council of India, and the Almond Board of California for studies on nuts. RT has received funding from Diabetes UK for the Diabetes Remission Clinical Trial and he is a member (unpaid) of the Joint SACN/NHS-England/Diabetes-UK Working Group to review the evidence on lower carbohydrate diets compared to current government advice for adults with type 2 diabetes. WY has received funding from the Veterans Affairs for research projects examining a low carbohydrate diet in patients with diabetes.

Provenance and peer review: Commissioned, externally peer reviewed

This article is one of a series commissioned by The BMJ . Open access fees for the series were funded by Swiss Re, which had no input in to the commissioning or peer review of the articles. The BMJ thanks the series advisers, Nita Forouhi and Dariush Mozaffarian, for valuable advice and guiding selection of topics in the series.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ .

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Improving Diabetes Control in a Medicaid Managed Care Population With Complex Needs

A primary care-based integrated care team — including a community health worker (CHW), registered nurse (RN), certified diabetes care and education specialist (CDCES)/registered dietician (RD) and behavioral health counselor — supports patients with type 1 or type 2 diabetes in reducing A1c levels.

Unmet social and behavioral health needs can exacerbate risk factors related to uncontrolled diabetes, a condition that disproportionately impacts communities of color and people with lower incomes.

Vayu Health, a California-based nonprofit organization, partnered with Health Net, a Medicaid managed care plan, and Ampla Health, a federally qualified health center, to improve diabetes management among a subset of Health Net’s Medicaid members. Together, the organizations implemented a primary care-based intervention offering integrated care to patients with type 1 or type 2 diabetes and an A1c ≥ 9%. This involved connecting patients to an interdisciplinary care team, which included an RN, a CHW embedded within the primary care clinic, and a CDCES/RD and behavioral health counselor who each met with patients virtually. The team worked closely with patients to develop personalized care plans focused on improving glycemic control and addressing other underlying health, behavioral health, and social needs.

The researchers compared outcomes for 51 program-enrolled patients with a comparison group of 477 patients, and found that post-enrollment average monthly A1c among program patients was 0.699 lower than the comparison group. Additionally, one-year post-enrollment, the study found a significant decrease in disparities in A1c control between Hispanic and non-Hispanic program patients.

Despite limitations, such as a small sample size and limited control for confounding variables, this research provides promising evidence consistent with a substantial body of literature demonstrating the benefits of integrated care across patient outcomes. The application of this care model to diabetes management is particularly notable given the condition's widespread prevalence and its disproportionate impact across race, class, and income levels. The program also underscores the potential for cross-sector partnerships in developing innovative care models, with the payer, provider, and a community-based nonprofit each playing crucial roles in the implementation of this program.

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Peggy Yarborough; Case Study: A Patient With Type 2 Diabetes Working With an Advanced Practice Pharmacist to Address Interacting Comorbidities. Diabetes Spectr 1 January 2003; 16 (1): 41–48. https://doi.org/10.2337/diaspect.16.1.41

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Advanced practice pharmacists in the field of diabetes work collaboratively with patients’ medical providers, often in primary care settings or in close proximity to the providers’ practices. They help to integrate the pharmaceutical, medical, education/ counseling, and direct patient care activities necessary to meet patients’ individual self-management and diabetes care needs.

Patient education and self-management behavioral change are underpinnings of pharmaceutical care, and not only as they directly relate to the use of medications. Pharmacists, especially those who are certified diabetes educators (CDEs), frequently provide diabetes patients with education not only on medications, but also on the overall disease state, nutrition, physical activity, decision-making skills, psychosocial adaptation, complication prevention, goal setting, barrier resolution, and cost issues.

In addition to these substantial education responsibilities, advanced practice pharmacists who are Board Certified–Advanced Diabetes Managers (BC-ADMs) play an expanded role that encompasses disease state management. This includes performing clinical assessments and limited physical examinations; recognizing the need for additional care; making referrals as needed; ordering and interpreting specific laboratory tests; integrating their pharmacy patient care plans into patients’ total medical care plans; and entering notes on patient charts or carrying out other forms of written communication with patients’ medical care providers. Depending on state regulations and physician-based protocols, some advanced practice pharmacists can prescribe and adjust medications independently or after consultation with prescribing clinicians.

The clinical activities of BC-ADM pharmacists are not carried out independent of referring, collaborative practitioners. Rather, they are complementary to and serve to enhance the diagnostic, complex physical assessment, and management skills of medical providers.

The following case study illustrates the pharmacotherapeutic challenges of diabetes with other comorbidities, which can lead to potential drug-drug and drug-disease interactions. Although it does not offer detailed solutions to such problems, this case does describe the process of patient care and problem resolution as approached by advanced practice pharmacists.

B.L. is a 58-year-old white woman who has been referred to the pharmacist clinician for pharmacotherapy assessment and diabetes management. Her multiple medical conditions include type 2 diabetes diagnosed in 1995, hypertension, hyperlipidemia, asthma, coronary artery disease, persistent peripheral edema, and longstanding musculoskeletal pain secondary to a motor vehicle accident. Her medical history includes atrial fibrillation with cardioversion, anemia, knee replacement, and multiple emergency room (ER) admissions for asthma.

B.L.’s diabetes is currently being treated with a premixed preparation of 75% insulin lispro protamine suspension with 25% insulin lispro preparation (Humalog 75/25), 33 units before breakfast and 23 units before supper. She says she occasionally “takes a little more” insulin when she notes high blood glucose readings, but she has not been instructed on the use of an insulin adjustment algorithm.

Her other routine medications include the fluticasone metered dose inhaler (Flovent MDI), two puffs twice a day; salmeterol MDI (Serevent MDI), two puffs twice a day; naproxen (Naprosyn), 375 mg twice a day; enteric-coated aspirin, 325 mg daily; rosiglitazone (Avandia), 4 mg daily; furosemide (Lasix), 80 mg every morning; diltiazem (Cardizem CD), 180 mg daily (per cardiologist consult); lanoxin (Digoxin), 0.25 mg daily (per cardiologist consult); potassium chloride, 20 mEq daily; and fluvastatin (Lescol), 20 mg at bedtime. Medications she has been prescribed to take “as needed” include sublingual nitroglycerin for chest pain (has not been needed in the past month); furosemide, additional 40 mg later in the day if needed for swelling (on most days the additional dose is needed); and albuterol MDI (Proventil, Ventolin), two to four puffs every 4–6 hours for shortness of breath. She denies use of nicotine, alcohol, or recreational drugs; has no known drug allergies; and is up to date on her immunizations.

B.L.’s chief complaint now is increasing exacerbations of asthma and the need for prednisone tapers. She reports that during her last round of prednisone therapy, her blood glucose readings increased to the range of 300–400 mg/dl despite large decreases in her carbohydrate intake. She reports that she increases the frequency of her fluticasone MDI, salmeterol MDI, and albuterol MDI to four to five times/day when she has a flare-up. However, her husband has been out of work for more than a year, and their only source of income is her Social Security check. Therefore, she has been unable to purchase the fluticasone or salmeterol and so has only been taking prednisone and albuterol for recent acute asthma exacerbations.

B.L. reports eating three meals a day with a snack between supper and bedtime. Her largest meal is supper. She states that she counts her carbohydrate servings at each meal and is “watching what she eats.” She has not been able to exercise routinely for several weeks because of bad weather and her asthma.

The memory printout from her blood glucose meter for the past 30 days shows a total of 53 tests with a mean blood glucose of 241 mg/dl (SD 74). With a premeal glucose target set at 70–140 mg/dl, there were no readings below target, 8% within target, and 91% above target. By comparison, her results from the same month 1 year ago averaged 112 mg/dl, with a high of 146 mg/dl and a low of 78 mg/dl.

Physical Exam

B.L. is well-appearing but obese and is in no acute distress. A limited physical exam reveals:

Weight: 302 lb; height 5′1″

Blood pressure: 130/78 mmHg using a large adult cuff

Pulse 88 bpm; respirations 22 per minute

Lungs: clear to auscultation bilaterally without wheezing, rales, or rhonchi

Lower extremities +1 pitting edema bilaterally; pulses good

B.L. reports that on the days her feet swell the most, she is active and in an upright position throughout the day. Swelling worsens throughout the day, but by the next morning they are “skinny again.” She states that she makes the decision to take an extra furosemide tablet if her swelling is excessive and painful around lunch time; taking the diuretic later in the day prevents her from sleeping because of nocturnal urination.

Lab Results

For the sake of brevity, only abnormal or relevant labs within the past year are listed below.

Hemoglobin A 1c (A1C) measured 6 months ago: 7.0% (normal range: <5.9%; target: <7%)

Creatinine: 0.7 mg/dl (normal range: 0.7–1.4 mg/dl)

Blood urea nitrogen: 16 mg/dl (normal range: 7–21 mg/dl)

Sodium: 140 mEq/l (normal range: 135–145 mEq/l)

Potassium: 3.4 mg/dl (normal range: 3.5–5.3 mg/dl)

Calcium: 8.2 mg/dl (normal range: 8.3–10.2 mg/dl)

Lipid panel

    • Total cholesterol: 211 mg/dl (normal range <200 mg/dl)

    • HDL cholesterol: 52 mg/dl (normal range: 35–86 mg/dl; target: >55 mg/dl, female)

    • LDL cholesterol (calculated): 128 mg/dl (normal range: <130 mg/dl; target: <100 mg/dl) Initial LDL was 164 mg/dl.

    • Triglycerides: 154 mg/dl (normal range: <150 mg/dl; target: <150 mg/dl)

Liver function panel: within normal limits

Urinary albumin: <30 μg/mg (normal range: <30 μg/mg)

Poorly controlled, severe, persistent asthma

Diabetes; control recently worsened by asthma exacerbations and treatment

Dyslipidemia, elevated LDL cholesterol despite statin therapy

Persistent lower-extremity edema despite diuretic therapy

Hypokalemia, most likely drug-induced

Hypertension JNC-VI Risk Group C, blood pressure within target and stable

Coronary artery disease, stable

Obesity, stable

Chronic pain secondary to previous injury, stable

Status post–atrial fibrillation with cardioversion

Status post–knee replacement

Financial constraints affecting medication behaviors

Insufficient patient education regarding purposes and role of specific medications

Wellness, preventive, and routine monitoring issues: calcium/vitamin D supplement, magnesium supplement, depression screening, osteoporosis screening, dosage for daily aspirin

Strand et al. 1 proposed a systematic method for evaluation of and intervention for a patient’s pharmacotherapy, using a process called the Pharmacist’s Work-Up of Drug Therapy (PWDT). The PWDT has been modified by subsequent authors, 2 – 4 but the process remains grounded in the following five questions:

What are reasonable outcomes for this patient?

Based on current guidelines and literature, pharmacology, and pathophysiology, what therapeutic endpoints would be needed to achieve these outcomes?

Are there potential medication-related problems that prevent these endpoints from being achieved?

What patient self-care behaviors and medication changes are needed to address the medication-related problems? What patient education interventions are needed to enhance achievement of these changes?

What monitoring parameters are needed to verify achievement of goals and detect side effects and toxicity, and how often should these parameters be monitored?

Outcomes and Endpoints

Clinical outcomes are distinctly different from therapeutic or interventional endpoints. The former refers to the impact of treatment on patients’ overall medical status and quality of life and should emphasize patient-oriented evidence that matters (POEMs) rather than disease-oriented evidence (DOEs).

Therapeutic endpoints include the anticipated and desired clinical effects from drug therapy that are expected, ultimately, to achieve the desired outcome(s). As such, therapeutic endpoints are used as surrogate markers for achievement of outcomes. Commonly, more than one endpoint will be needed to achieve an outcome. For example, near-normal glycemic control and normalization of blood pressure (endpoints) would be necessary to significantly reduce the risk of end-stage renal disease (outcome).

Therapeutic endpoints should be specific, measurable, and achievable within a short period of time. Achievement of clinical outcomes usually cannot be determined except by long-term observation or retrospective analysis.

Outcomes and endpoints for any given patient should be determined collaboratively between patient and provider before selecting or initiating pharmacotherapy or nonpharmacological interventions. Taking the time to identify these components up front (and periodically revise them later on) helps ensure that subsequent medications or strategies are appropriately directed. It further ensures a common vision and commitment for ongoing patient care and self-management among the care team (including the patient), thus maximizing the potential for optimal disease control and patient satisfaction.

The outcomes and endpoints for a patient such as B.L. are numerous and obviously would not be addressed or attained in a single session. Therefore, after desired outcomes and endpoints are determined, they should be prioritized according to medical urgency and patient preference. Implementation and goal setting related to these priorities can then be undertaken, thus establishing a treatment plan for the eventual attainment of the full list.

During ongoing and follow-up visits, this care plan should be reviewed and modified as indicated by changes in patient status, preferences, and medical findings. Examples of desired outcomes and endpoints for B.L. are given in Tables 1 and 2 . For the sake of brevity, these tables are not intended to be inclusive.

Medication-Related Problems and Proposed Interventions

With agreement between patient and clinician concerning desired outcomes and endpoints, the next logical step is to evaluate whether the current treatment plan is likely to achieve those goals, or, if treatment is to be initiated, which therapies or interventions should be selected.

According to Strand et al., 1 a medication-related problem is any aspect of a patient’s drug therapy that is interfering with a desired, positive patient (therapeutic) outcome or endpoint. The PWDT proposes a systematic and comprehensive method to identify, resolve, or prevent medication-related problems based on the following major categories:

No indication for a current drug

Indication for a drug (or device or intervention) but none prescribed

Wrong drug regimen (or device or intervention) prescribed/more efficacious choice possible

Too much of the correct drug

Too little of the correct drug

Adverse drug reaction/drug allergy

Drug-drug, drug-disease, drug-food interactions

Patient not receiving a prescribed drug

Routine monitoring (labs, screenings, exams) missing

Other problems, such as potential for overlap of adverse effects

Once problems are identified, resolutions must be developed, prioritized, and implemented. Patient or caregiver input is especially helpful at this stage because the individual can describe subjective as well as objective data, expectations or concerns that may be affecting drug therapy, and deficits in drug knowledge, understanding, or administration.

Resolutions may result from numerous strategies, including dose alteration, addition or discontinuation of medication, adjunct medications, regimen adjustment, complementary therapies, instruction on medication administration or devices, disease or medication education, development of “cues” as compliance reminders (e.g., pill boxes), and identification of ways to avoid, detect, or manage side effects or toxicities. Needless to say, the involvement of patients and family or caregivers is critical for successful implementation of most resolution strategies and for optimal disease management.

Because of the extent of B.L.’s medication-related problems and potential interventions ( Tables 3 and 4 ), it was agreed to tackle first her asthma exacerbations and high blood glucose levels. To this end, B.L. was counseled about the role of maintenance asthma medications versus rescue drugs. The root of her confusion between these agents was easy to understand—because the prednisone and fluticasone were both called steroids, it seemed likely that the tablets were a cheaper and easier way to take the medicine. Likewise, since albuterol and salmeterol were both called bronchodilators, it seemed that the albuterol was the cheaper way to take the medicine.

Having grasped the concept of asthma prevention, she was willing to convert to a product combining fluticasone and salmeterol (Advair Diskus) for maintenance/prevention and to reserve the albuterol for quick relief of acute symptoms. Free samples of the new product were dispensed, and B.L. was enrolled in the manufacturer’s indigent drug program for subsequent supplies.

She was further instructed on the use of a peak flow meter and advised to monitor her readings and symptoms. At the next visit, these data will be used to determine her maximal expiratory effort (“personal best”) and to construct an asthma action plan.

B.L.’s insulin was changed to a basal-based regimen utilizing bedtime glargine (Lantus) insulin and premeal lispro (Humalog) insulin. Education was provided on this dosing concept. She and the pharmacist discussed how this regimen can give greater flexibility in dosing, especially for responding to changes in diet, exercise, and disease exacerbations or medications. She was also given an initial supplementary adjustment algorithm (sliding scale) to correct for any temporary elevation of blood glucose. She agreed to test four times daily and to record her blood glucose results, carbohydrate intake, and insulin doses. At the next visit, these data will be used to modify the adjustment algorithm and to construct a prospective algorithm for matching premeal bolus insulin to the anticipated carbohydrate intake (insulin-to-carbohydrate ratio).

The final interventions for this visit were to increase the dose of potassium chloride and change the fluvastatin to atorvastatin (Lipitor) to further reduce B.L.’s LDL cholesterol. Medication education for atorvastatin was provided, and patient questions were answered.

Other medication-related problems and interventions identified for B.L. are listed and briefly discussed in Tables 3 and 4 . For the sake of brevity, these lists are not inclusive nor are all pharmacotherapy issues discussed.

Monitoring for Effectiveness, Side Effects, and Toxicity

The last step in the PWDT process is to develop a plan to evaluate the patient’s progress in attaining desired outcomes, therapeutic endpoints, and behavior changes; to assess effectiveness of pharmacotherapy; and to identify side effects, drug interactions, or toxicity issues that need to be addressed.

The monitoring/follow-up component is the most tedious aspect of the PWDT. For each medication or intervention, key parameters must be identified as markers for effectiveness, for side effects, for drug interactions, and for toxicity. In addition, the time frame and process for assessing those parameters must be determined. Finally, the desired range for the parameter must be listed or a “decision point” must be identified to signal that additional action will be required.

It should be noted that only a limited number of parameters are selected for a given patient. For example, it is not necessary to list and monitor for every possible side effect with equal intensity and frequency. Selection of the monitoring parameters is based on the positive effects (efficacy) that are most important to the care of that patient, as well as the adverse effects (side effects, toxicity, or drug interactions) that are most important to avoid for the safety of that patient or to which that patient is most prone.

Because the monitoring component is usually extensive, examples listed for B.L. in Table 5 have been limited to three of the medication or regimen changes that were made at the first pharmacist visit: switching from fluvastatin to atorvastatin; switching from two shots of premixed 75/25 lispro to bedtime glargine with premeal lispro; and substituting the combination inhaler product for her fluticasone and salmeterol MDI prescriptions. Because atorvastatin and fluvastatin differ chemically, the monitoring parameters for this change are similar to those for initiation of a new medication. Monitoring for the new insulin regimen (basal insulin with premeal bolus) focuses primarily on glycemic control patterns and hypoglycemic episodes. Because B.L. has previously used the two ingredients of her new inhaler product (fluticasone and salmeterol) without adverse effect, monitoring of her new asthma therapy is focused on effectiveness, tolerance of inhalation of its dry powder formula, and use of the administration device.

Diabetes patients with multiple co-morbidities have concerns about all of their problems, not just the diabetes; therefore, BC-ADM pharmacists must comprehensively explore all the ramifications of comorbidities as well as patients’ feelings, expectations, and concerns for total health. B.L. is a good example of this; even though her referral was for “diabetes management,” her greatest concern at this visit was her asthma exacerbations.

As can be seen in this case, each coexisting disease or coprescribed drug has a domino effect, affecting other diseases or drugs and ultimately affecting quality of life. With input from B.L., the pharmacist clinician was able to develop a PWDT that addresses her diabetes as well as her other health care needs.

B.L. was able to leave the health center with a few achievable self-care goals and medication changes that address her acute concerns and with the knowledge and confidence that, at each subsequent visit, additional progress will be made toward her personalized health status goals.

Examples of B.L.’s Desired Outcomes

Examples of B.L.’s Therapeutic Endpoints

Examples of B.L.’s Medication-Related Problems

Examples of B.L.’s Interventions (Prioritized and to be Implemented Accordingly)

Examples of B.L.’s Monitoring Plans

Peggy Yarborough, PharmD, MS, BC-ADM, CDE, FAPP, FASHP, NAP, is a professor at Campbell University School of Pharmacy in Buies Creek, N.C., and a pharmacist clinician at Wilson Community Health Center in Wilson, N.C.

For information concerning POEMs and DOEs: a multitude of literature on this topic is available through Internet sources. Search for “patient oriented evidence that matters” using a medical topic browser.

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Tensions in Diabetes Care Practice: Ethical Challenges with a Focus on Nurses in a Home-Based Care Team

• Open Access
• First Online: 20 July 2017

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• Pei-Yi Liu 3 &
• Helen Kohlen 4  

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Caring for patients with chronic diseases, including diabetes, causes ethical dilemmas and challenges healthcare professionals constantly during their daily work, particularly nurses. This qualitative case study concentrates on home-care nurses’ experience in diabetes care practice, where complex care takes place in a multi-professional team. The research findings show that home-care nurses experience tensions in the diabetes care context. Tensions can be identified around three themes: identification of care receivers, performance of care actions and foundations of care relationships. The healthcare environment revealed a sense of responsibility without authority, while professional caring responsibilities are not made explicit. Nurses are observably overwhelmed in diabetes care. The research findings may assist in improving diabetes care practice by clarifying the nursing professional’s roles, intensifying nurses’ professional awareness and caring competencies, as well as establishing a nourishing care environment in which all care team members share responsibility and caring.

The authors would like to acknowledge the research support of the department of the home-care centre (PflegeNetz) at the university hospital Freiburg, which provided the opportunity to have conversations with the participants on which this study is based.

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• diseaseDisease

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Introduction

The prevalence of diabetes is rising worldwide and the condition has become a major health and economic problem. Diabetes is a chronic illness which results in a relentless, ongoing and incurable suffering, and an inseparable part of it is the suffering of the whole person. The appropriate management of diabetes care includes more than just glycaemic control. How to support patients to live well with diabetes is a tough lifelong task for both patients and healthcare professionals.

Scholars have engaged in promoting the quality of diabetes care for a long time. Disease self-management and self-efficacy have been reported as important concepts in diabetes care and empowering patients to be active can lead to successful diabetes management (Moser et al. 2006 ; Shigaki et al. 2010 ). For patients and healthcare professionals, respecting the disease without letting it dominate the patient’s life is key (Ingadottir 2009 , pp. 77–92). Normalizing the process of managing diabetes can encourage patients to regulate their lifestyles with respect to controlling the disease (Olshansky et al. 2008 ).

In diabetes care practice, an individual care plan tailoring to the patient’s needs and ongoing care provided by healthcare professionals who work together could be suggested as constituting good care (McDonald et al. 2012 ). A collaborative healthcare team can not only strengthen diabetes self-care in practice, but also ensure that effective medical, preventive and health maintenance interventions take place (Von Korff et al. 1997 ). The foregoing argumentation reinforces the need for implementation of “The Logic of Care” in diabetes care practice to achieve improvement.

“The Logic of Care” is based on Mol’s field research. Using methods such as ethnographic observations, background research and interviews with diabetes patients and medical practitioners in a hospital in the Netherlands, Mol ( 2008 ) engaged critically with the current healthcare models which see patients as consumers and citizens. In the light of Mol’s argumentation, care is not a limited product, but more like a dynamic and open-ended process (Mol 2008 , p. 14). A caring process consists of interactive relationships among all of the caring actors (e.g. patients and professionals), and it can be shifted and adapted according to different care outcomes (Mol 2008 , p. 20). With respect to the concept of patients as citizens who have abilities and rights to make their own choices and enact their will, Mol elaborated that the patient-citizens have little choice but to bracket a part of what they are and seek ways to live with a disease (Mol 2008 , p. 35). Caring is therefore a matter of being attuned, respecting and being adaptable instead of controlling (Mol 2008 , p. 36).

By Mol’s assumption, care has its own logic. But one kind of logic (e.g. the logic of care) is not always intrinsically better than other kinds of logic (e.g. the logic of choice) (Mol 2008 , p. 92). In practice, we sometimes need the logic of care, but it can be employed alongside other logics depending on the care situation . It is important that all caring actors be active (Mol 2008 , p. 93). In this paper, we utilized “The Logic of Care” conceptualized by Mol for our research approach. Meanwhile, we stressed the ethical dilemmas occurring in a home-based care team.

The notion of the global marketplace has spread to the domain of health services, so that health has come to be seen as a commodity, with the body as its site and the patient as a customer (Parker 1999 ). Patients’ satisfaction has become a significant indicator to measure the quality of care when patient-centred care is supplied (Robin et al. 2008 ; Wagner and Bear 2009 ). Footnote 1 The challenge for healthcare workers is to work within, but also to resist the reductionist impetus of economically based and commercially driven approaches to healthcare (Parker 1999 ). Healthcare workers face the rigorous tasks of maintaining holistic care, preserving the personal and professional–recipient relationship and finding ways of demonstrating their capacity to deliver high-quality care in a cost-effective way (Parker 1999 ). Moral tensions may accordingly arise.

Moral tensions in care practice may additionally originate in the different understanding of illness and the distinct demands of diabetes care on healthcare professionals and patients. Patients focus more often on consequences and the impact on their daily life, while healthcare professionals pay more attention to the medical treatment and economic efficiency (Hörnsten et al. 2004 ). Whereas healthcare professionals pay much attention to the best interests of patients , they usually have to exercise both clinical and moral responsibilities in relation with patients. For this reason, care responsibilities are determined not only by considerations of the patients’ rights and respect for their freedom but also by consideration of the wider health needs of the individual and the community (Thompson et al. 2006 ).

In the healthcare system, medical orientation, hierarchy, authority and unequal power among physicians, patients and nurses are noticeable (Daiski 2004 ; Kramer and Schmalenberg 2003 ). The hierarchy between different professionals affects how a professional can act on his own moral position (Kälvemark et al. 2004 ). How do healthcare workers work within this kind of medical environment and simultaneously preserve their professional awareness ? Which care problems and ethical dilemmas can be raised? How do healthcare workers practically reflect on care problems and ethical dilemmas? And how do healthcare workers deal with them in their daily work? To further grasp the ethical dilemmas in diabetes care, it makes sense to take a look at the actors and to review how authority , responsibility and trust play out among physicians, patients and nurses in everyday practice.

Nurses have hitherto played a barely visible role in the German healthcare system, but they have implicitly been expected to fulfil the dominant care role. The nurse is not only the person who provides the care in practice, but also the one who has the most contact with patients and who understands patients better than other healthcare professionals (Rich 2008 ). We would like to take home-care nurses as an example in this paper to explore how tensions arise and how they are dealt with in the field of patient care. Footnote 2

Methods and Materials

This study is a case study with a qualitative approach. This paper concentrates on home-care nurses’ experiences and tensions in diabetes care practice where complex care takes place involving a multi-professional team.

The home-care centre at the university hospital Freiburg in southwest Germany served as the setting for the research case. Footnote 3 A field observation and in-depth interviews were implemented to collect empirical data. The interview participants were six home-care nurses who had a diabetes care education or a background of diabetes care experience and had held their current position in the German home-care context for at least two years.

From April to November 2012, direct and participant observations and structured face-to-face interviews with home-care nurses took place. Narrative thematic interviews were performed using an interview guide covering topics related to the experience in diabetes management, the experience of multi-professional team work and needs in diabetes care. Footnote 4

Interviews and feedback sessions were audiotaped and transcribed verbatim for the thematic analysis of the content. Some selected transcripts of interviews were coded by a research group to identify additional insights. Data management was facilitated by the use of a computer program (NVivo 10). The analysis of the interviews was guided by Creswell’s thematic analysis ( 2007 , pp. 147–176). A two-level coding scheme was used, starting with a provisional list of codes based on selected concepts identified in the literature, with new codes added based on the data (Miles et al. 2013 ). In an iterative process of coding and condensing the data, recurring themes emerged. In terms of an ethical scheme, three abstracted themes were identified as underlying or latent messages in diabetes care practice; these were then confirmed as being common to all categories.

By analysing the empirical data focused on the experience of home-care nurses, three themes emerged: identification of care receivers , performance of care actions and foundations of care relationships. These frame the tensions home-care nurses face while working with patients and with other healthcare professionals in the diabetes care context. The tensions around the three themes are:

The identification of care receivers : Tension between patients and customers.

The performance of care actions: Tension between an ongoing process and finding an end by acceptance.

The foundations of care relationships: Tension between authority and responsibility.

Patients Versus Customers

In diabetes care, home-care nurses stated that they treat their care receivers as patients instead of customers. Footnote 5 For nurses, the person who receives medical treatment is considered a patient in the nurse–patient relationship, whether his disease is acute or chronic. This way, nurses are able to provide continuous medical care for outpatients from hospitals to the surrounding where they live. The care relationship ends the day when nurses accept that patients don’t want it and hand over the responsibility to them:

So we call all of our patients ‘patients’. So we don’t have customers. Because we get most of our patients directly from the hospital and they have been treated as patients there. Therefore, they will also be simply treated as patients by us. I cannot call a part of my patients ‘customers’ and the other part of them ‘patients’. […] When patients are independent someday, like Mr. Harry, then we can leave them and say that the patient relationship is closed. But as long as we take care of a patient, he is a patient for us. He won’t be a customer sometimes only because of his chronic disease . (I-NN-01)

When nurses talked about good care, it meant that all of the patients, nurses and physicians feel satisfied with their care outcome. A good care outcome for diabetes care was quickly linked to good blood sugar values: “For me, good care means simply that the patient is satisfied, we are satisfied and the family doctor is satisfied with the blood sugar values” (I-NN-01).

In care practice, nurses avoided to challenge patients’ autonomy and respected their right to choose the way they live. Nurses think that they can’t force patients to act, but can only offer suggestions. Footnote 6 However, offering suggestions doesn’t always lead to success:

I can’t force anybody to do anything. I can only suggest to them to do things which are good for their bodies and I can always try to say, ‘You should move more often’, but it doesn’t always work. (I-NN-05)

An Ongoing Process Versus Finding an End by Acceptance

Nurses recognized that creating fear and exerting control is not a good idea for diabetes care. They said, “We are not there to control” (I-NN-01). Indeed, nurses cannot control what their patients eat or what they do throughout the day since they only come for a short visit. Instead of controlling, it is more important to offer an alternative way of keeping in touch with patients. However, attempts to work with alternatives have run into difficulties in practice. Eight minutes are planned in the schedule for one home-visit with a diabetes patient . The time pressure and insufficient knowledge limit nurses’ work a lot. In particular, nurses have no chance to try alternatives if their patients reject their advice:

It would be very good if we could take more care of diabetes patients, including offering advice on nutrition. But we have no time, and in many cases we don’t have current knowledge. We simply don’t have enough knowledge on nutrition counselling. And some patients do not want it either. They reject it. (I-NN-04)

Nurses expressed that continually trying to achieve their care goals is their wish as a healthcare professional, and a few nurses believed that “constant dripping wears the stone” (I-NN-06). Unfortunately, patients’ lack of intention to follow up on the principles of diabetes management restrains nurses from going further during the care process. In the following case, a nurse tried to motivate her patients at the beginning, but after some failed attempts, the nurse eventually accepted her patient’s decision even though this decision was against her will. However, this outcome led to an uncomfortable feeling on the part of the nurse and hurt the patient–nurse relationship as well:

The patient was exasperated one day and told me, ‘Stop now, I don’t want to hear about it [diabetes care] any more’. Then I said, ‘Okay, let’s let it go’. Then I said nothing about it any more. I had argued with him because of his diabetes. But he still eats chocolate, doesn’t change his life. Then he has to inject more and more Insulin and is getting fatter. He wants that. One day you have to say, ‘Okay’ and accept it. Although it is a difficult decision, but what should I do? I cannot beat him and push him on the way, right. (I-NN-06)

The tension , however, creates a lot of stress for nurses when they have to accept undesired outcomes. Nurses feel pity and are disappoint about situations in which improvements cannot be made: “This is of course an example in which one has a bad feeling. At this point, you will ask yourself about what you still expect” (I-NN-03). Sometimes, nurses face critical care situations without the possibility of making a difference. Nurses then have to deal with feelings of fear and guilt:

It happened often that his blood sugar values were 18 mg/dl or something like that. That’s a very, very uncomfortable situation. And I have faced such tense situations twice. That’s a very unsettling and scary situation. But as I said, it cannot be changed. (I-NN-01)

Authority Versus Responsibility

In home-care practice, nurses usually identify as mediators vis-à-vis the healthcare team and see themselves as advocates for the patients. Nurses reported that their mission in practice is to create a bridge between physicians and patients:

We can actually only play the role of a mediator or a messenger when, for instance, the patient has difficulties to communicate with his family doctor or when the family doctor doesn’t visit his patient regularly. Then we have to call the doctor and inform him, ‘The patient’s values are not good and we need to do something to change it’. In this case, we play the role of an advocate for the patient. So we are simply mediators and advocates. (I-NN-01)

Good cooperative teamwork is important for healthcare, but not always seen in practice. Information flows are often interrupted in a variety of ways between different medical organizations. In practice, home-care nurses often receive a medical plan without the related background. This is neither a satisfying nor a safe situation for nurses. For one thing, nurses are then unsure about their work. In addition, they cannot explain changes in their care to the patients. Nurses have pointed out that they have to take responsibility for the care they offer, and that they therefore want to get clear answers. Nevertheless, they are sometimes too fearful to clarify their questions with physicians because of the strict hierarchy and the nurses’ low position in the current healthcare system:

I would like to know why the doctor raised the Insulin dosage. I’m still not sure what I should do now. Should I contact with the family doctor or a diabetes specialist? Should I send a fax to the family doctor and ask him why he has raised the dosage? But I think that sending a fax is so impersonal. I do not know him. Maybe he will feel that I am stepping on his toes if I, as a ‘lowly’ nurse, ask him something about his medical plan. But I couldn’t explain to my patient why he needs more Insulin now, and I was also surprised about it myself. […] I am not one to merely follow orders. I also have a responsibility for what I do. (I-NN-06)

Many nurses have mentioned that communication with physicians is not always a comfortable experience. Nurses have complained that it is difficult to reach physicians or to talk to them. Sometimes nurses have tried to communicate with physicians via the patients. However, this indirect way may lead to inter-professional mistrust. Furthermore, nurses have sometimes suggested to their patients to change their family physician in order to create a safe care environment and allow for cooperative teamwork:

When I inform a family doctor that his patient is in a bad condition, then he must respond to my request and do something. […] If he doesn’t act, I will say to the patient, ‘It took such a long time until your doctor came. Maybe you should consider taking another doctor who comes quickly’. I have already done that. Whether the patient does it or not is another matter, because patients usually say, ‘Oh, we have already had that doctor for 20 years and he has always come’. (I-NN-06)

Many nurses believe that patients’ have a lot more trust in their physicians than in nurses. According to the nurses’ experience, patients follow what their doctors say, no matter what it is. This creates a tension for nurses. Even if the nurses disagree with the physicians’ opinions, they will still obey the physicians’ orders. Nurses do so not only because physicians have the legal right to have “the last word”, but also because the nurses don’t want to confuse patients with two opposing sets of advice:

What doctors say is right. So even if I sometimes don’t agree with what the doctors say, I don’t want to confuse my patients. I cannot just go to a patient and say, ‘What a nonsense your doctor told to you’, because the patient will become totally uncertain. I have experienced that one time, when I said to the patient, ‘We must do that’, and the patient answered, ‘Oh, but my doctor told me something quite different.’ And then he became very uncertain. (I-NN-02)

In the discussion part, we draw up some questions formed around tensions to introduce our debate. But our purpose is not to offer clear answers. Instead, we would like to encourage our readers to rethink the tensions based on a variety of discourses. Thus, answers can be different from divergent perspectives, and care work can be presented with a variety of faces.

Can Care Receivers Be Both “Customers” and “Patients”?

The first theme of the research interprets the tension regarding the identification of care receivers as customers and patients. According to the research, home-care nurses consider their care receivers “patients” because this helps nurses provide a continuum of care with different organizations. Nevertheless, consumer sovereignty Footnote 7 is usually taken into consideration in healthcare. It is reflected in nurses’ care activities in that they avoid putting pressure on patients. For instance, when a patient rejects a nurse’s offer of a nutrition consultant’s services, this approach to care is discontinued in practice. In this case, the logic of choice is at work and the care receiver is treated more like a customer than a patient.

Since consumer sovereignty has high priority in the healthcare market, patients are often practically treated as customers and as citizens and choices are made following the patients’ wishes (Ryl and Horch 2013 ). Nurses then have difficulties carrying out interventions against patients’ will. As a nurse explained, “I cannot force anybody to do anything” (I-NN-05). Nurses often have to compromise, which may run counter to their professional awareness . While the understanding of care receivers as patients and of the value of the person’s wholeness is rooted in the identity of the nursing professional, the way nurses have to act is often contrary to this identity in practice. This contradiction can produce a moral tension in nursing work. It might lead to frustration with the caring process or damage the trust-relationship between nurses and patients. We will discuss these two themes later in the second and third sections.

In home-care practice, satisfaction has been used as the main indicator to decide if good care is offered. The terms “quality in care service” and “patient satisfaction” are often connected and brought on the healthcare agenda (Bostan et al. 2007 ). Patient satisfaction is derived from the marketing perspective. Patients are the most important clients of health institutions and their satisfaction is hence the main product of health institutions (Torpie 2014 ). Patient satisfaction has been explained in terms of adding value and creating a service exceeding or meeting patients’ expectations (Torpie 2014 ). However, when healthcare professionals only focus on patients’ satisfactions during a care process, they provide their services often as commodities according to the customers’ desires (Mol 2008 , p. 28).

There is a danger in thinking of care as a commodity, as a service for purchase. First, the diverse care goals and needs patients and nurses have may result in a tension for nurses. This is because patients place a lot of trust in those who care for them and for nurses to respond in a trustworthy way, they must care about their patients, not just for them (De Raeve 2002 ; Hörnsten et al. 2004 ). Second, when healthcare professionals begin to talk in terms of commodification , they too quickly begin to slip into thinking of the time and cost for a service instead of the needs of those cared for (Olshansky et al. 2008 ; Tronto 2010 ). Third, caring for patients is a kind of caritas. Caring for ill people is valuable and meaningful in and of itself and cannot be calculated and priced as a commodity (Maio 2009 ).

In the words of Duttweiler ( 2007 ), health is not a product that can be sold and a patient is not a customer who buys a product, but a person who needs professionals’ help to deal with his diseases . In this sense, care professionals have a duty to ensure that patients are able to give their agreement to the care process by, for instance, ensuring their empowerment, which is considered a transformative way of autonomy (Duttweiler 2007 ). Thus, thinking of care receivers as patients doesn’t mean ignoring their autonomy or denying their rights to make decisions about their needs, but providing alternatives, sources of legitimacy and information as counter-acting forces (Tronto 2010 ).

To take care of patients’ satisfaction, to respect patients’ rights of make their own choices or to empower patients are different ways of caring. The concern in diabetes care is not which one is better, but which one is more appropriate to a situation and what can be done in practice (Mol 2008 , p. 92). That means that patients’ satisfaction can be one of the indicators to measure the quality of care , but it shouldn’t be the only one. Consumer sovereignty should be respected, but all of the patients’ expectations should not necessarily be fulfilled in practice without thinking of the actual needs for care, especially when dealing with diabetes.

Can “Finding an End” Be Acceptable in an Ongoing Care Process?

The second theme summarized from the research findings is around care actions. Within the logic of care, care is an interactive, open-ended process that may be shaped and reshaped depending on its results (Mol 2008 , p. 23). Nevertheless, nursing care has its boundaries in practice. In the research, a tension emerged between continually trying for care improvements and finding an end by accepting an undesired care outcome.

This kind of distress is usually connected with the differences in care goals between patients and nurses, as well as their different perspectives on what “good” is. A care intervention such as asking patients to follow strict nutrition rules may be considered as good for diabetes management, but may limit patients’ day-to-day life and happiness a lot. Patients may therefore reject an approach to care during a care process. The logic of care implies the need to pay attention to the information obtained from care practice without passing judgment as to what is good or bad, so that healthcare professionals and patients respect each others’ experience and are attuned to each others’ strengths and limitations (Mol 2008 , p. 65).

While healthcare professionals are carrying out their duty of ensuring patients’ safety and devoting themselves to keeping risk and harm away from patients’ bodies, patients’ wishes and/or desires may often be ignored. For instance, if a nurse tries to prohibit her patient from eating chocolate, which is his favourite food, that patient may suffer from the feeling of being controlled. On the contrary, if the nurse knows more about the background of her patient, she may be able to understand better why the patient takes a given care decision and why the decision is important for him. Footnote 8 If nurses can, in their care, balance the priorities and concerns of both patients and healthcare professionals and find a common denominator leading to an outcome in which the patient’s safety is ensured, nurses may accept that letting it go can, in some cases, be the best option for a patient , even it doesn’t meet the nurses’ expectation of the care process. As Mol explained, “The logic of care is not preoccupied with our will, and what we may opt for, but concentrates on what we do”. (Mol 2008 , p. 8) Unfortunately, nurses do not, in practice, have the time to get all the relevant information or the space and ability to reflect on these kinds of dilemmas in care during their busy and stressful work.

Modifying one’s lifestyle is part of diabetes treatment, but it is the most difficult part of diabetes management. In the practice of care, the patients’ intentions to follow through on a care intervention influence the care professionals’ motivation as well. It is often seen in diabetes care that nurses stop trying to offer a care improvement (e.g. a nutrition consultation) if they recognize that their patients have no interest in it. Likewise, when patients show the will to take part in care activities, nurses do more for them. Yet, a clinician–patient relationship requires more than a customer service oriented by customers’ decisions. It is a therapeutic relationship which focuses on caring for an individual more than on customer service (Torpie 2014 ). In other words, it is sometimes necessary in care practice to push patients to do things for their bodies, just like a diabetes patient must inject insulin regularly if they want to stay alive (Mol 2008 , p. 45).

Encouraging patients to be active by sharing doctoring and care responsibility with other care professionals is advisable in diabetes care (Duttweiler 2007 ; Mol 2008 , p. 65). From this point of view, it is important that patients, as customers in the medical market, have to realize their limitations in professional care , to trust their care professionals and to accept help (Duttweiler 2007 ). Patients have to be educated about their disease and to act themselves during their disease management. Care professionals have to provide support until patients get a full understanding of their disease management and are able to integrate it into their life (Maio 2009 ; Raspe 1999 ). It is a long-term process which costs time, money and manpower. When working within a medical care system organized on the basis of economic efficiency , it is unfortunately difficult to bring theory into practice. As a nurse told us, “It would be very good if we could take more care of diabetes patients. […] But we have no time, and in many cases, we don’t have current knowledge. […] And some patients do not want it either. They reject it” (I-NN-03).

Accepting an undesired care outcome is symptomatic for an ambivalence to their professional awareness for home-care nurses and leads to feelings of uncertainty and disappointment. As a nurse said, “ […] at this time, you will ask yourself what you still expect” (I-NN-03). In keeping with their professional identity, nurses expect that a care improvement can be implemented and patients’ safety can be ensured. In reality, nurses can have to deal with critical care situations without any possibility of changing the situation. Nurses might therefore fall into a kind of moral distress , doubting themselves and feeling fear and guilt. During nurses’ daily work, especially in home-based care practice, nurses have only few opportunities to exchange their experiences in care with their care team or to discuss ethical dilemmas with others.

ANA ( 2008 ) noted in the “ANA Nursing Code of Ethics” Footnote 9 : “The nurse owes the same duties to self as to others, including the responsibility to preserve integrity and safety, to maintain competence , and to continue personal and professional growth”. The research data reflected the requirement to enhance nurses’ personal and professional growth. The “Code of Ethics” further articulated: “Nurses are required to have knowledge relevant to the current scope and standards of nursing practice, changing issues, concerns , controversies and ethics. Where care required is outside the competencies of the individual nurse, consultation should be sought or the patient should be referred to others for appropriate care” (ANA 2008 ). The logic of care states a similar aspect: “A care process involves a team and tasks are divided between the members of that team in ever-changing ways” (Mol 2008 , p. 21). It is essential to develop efficient networking among different care professionals in diabetes care practice. Meanwhile, each care professional has to learn how to work together with other care professionals and has to rethink collaborative ways of working within a team.

Can Care Responsibility Play Out Within Trust-Relationships Without Authority?

This is the third theme associated with the foundations of care relationships . In this section, trust in a nurse–physician relationship and in a nurse–patient relationship is embedded within a healthcare environment full of a sense of responsibility without authority while professional care responsibilities are not made explicit.

The phrase of “responsibility without authority” has been widely used in various scholarly discussions such as social, economic, management, political, medical and healthcare discourses. It often designates the tension in relationships part of a hierarchy, for instance, in a nurse–doctor relationship (Burston and Tuckett 2013 ; Pendry 2007 ; Pullon 2008 ). While analysing the research data and reviewing the literature, it became clear that the expression “responsibility without authority” appeared within the relationships among physicians, nurses and patients in home-based diabetes care practice. While nurses are expected to be responsible for their work, they often experience powerlessness to act within the hierarchical healthcare system where physicians have both the authority and the patients’ trust.

In the German healthcare system, medicine is considered as powerful and medical care is seen as a professional endeavour in care practice. The centralization of medical care in society causes an uneven power distribution in professional relationships. Physicians have the power to take medical decisions and nurses have the responsibility to implement them. A moral dilemma can appear in the hierarchy between different professionals when a person who is lower in the hierarchy has to carry out orders from a superior against their own conviction (Kälvemark et al. 2004 ). Burston and Tuckett ( 2013 ) have illustrated how nurses suffer from this care dilemma as “nurses [are] faced with the choice of either overstepping the boundary and acting, or waiting for the physician, watching the suffering of their patients”. The problem in this relationship may stem from the different approaches to healthcare delivery, such as a curative as opposed to a care-based approach (Burston and Tuckett 2013 ).

Traditionally, physicians have authority in medical care and patients trust their physicians as well. A nurse described how she experienced physicians’ authority during her daily work in that “what doctors say is right. So even if I sometimes don’t agree with what the doctors say, I don’t want to confuse my patients” (I-NN-02). This quote reveals how authority, responsibility and trust play out in a care team: The patient trusts his physician; the nurse recognizes what doctors say may not always be right; the nurse experiences difficulties in influencing the decision of her patient ; the nurse admits that physicians have the right to have the last word; the nurse knows that she has to be responsible for what she does; the nurse might communicate with the physician or she might be not; the nurse consequently follows the doctor’s orders. The care responsibility seems to be silently transferred from one hand to another when the nurse thinks that physicians are in charge. Actually, nurses still have to take responsibility for the care implementation and patients have the right to be informed. Physicians also have to take responsibility for ensuring the safety of medical care. From the above case, we can also observe that physicians’ authority invisibly exists within a nurse–patient relationship. Even on the scene, where physicians are not present in a care activity, their authority affects the interactions between nurses and patients.

Another nurse highlights how she is under the physicians’ authority in that, “Maybe he (a family doctor) feels his toes are being stepped on if I, as a ‘lowly’ nurse, ask him something about his medical plan” (I-NN-06). According to the research data, nurses feel dissatisfied and uncertain when communication within a care team is not flowing, when their voices are not heard or not accepted, or when they don’t have the authority to negotiate within a care team. Pendry ( 2007 ) affirmed that nurses have to carry a lot of responsibility, but lack the necessary executive authority to do anything about a situation. From nurses’ point of view, some of the most painful practical tensions arise because they lack the authority to act on their own, to exercise their own judgment, to take the initiative and to go against physicians’ orders (Thompson et al. 2006 ). An international study demonstrated similar findings: “Nurses felt that they lacked either power to speak against physicians’ opinions”, or “[n]urses believed that their opinions would not be accepted” (Malloy et al. 2009 ).

To hand over the care responsibility or to accept an undesired care outcome are not pleasant experiences for nurses. Nurses usually feel mistrust and disappointment about themselves, and sometimes about physicians and/or the healthcare system. This tension , as Burston and Tuckett ( 2013 ) have articulated, may not only manifest internally or externally, but may harm the individual, others and/or the system. It may further induce feelings of anger towards oneself, self-doubt, diminished self-esteem, depression and even burnout and feelings of anger , bitterness, dismay and frustration towards others (Burston and Tuckett 2013 ).

An approach whereby all care team members, including physicians, nurses and patients, share the doctoring and the responsibility may help in dealing with this kind of tension in practice. That way, when nurses recognize that physicians are unable to make an optimal decision for a given care situation , nurses would be able to communicate with physicians, enabling them to better take responsibility for the patients’ safety. The relevant professional care competencies should be taught in nursing courses and in practice in the field. Physicians also have a responsibility to enhance their professional competencies, including by creating an intensive networking with other healthcare professionals to share doctoring. Additionally, healthcare institutes should be able to organize better cooperative teamwork so that an open and effective dialog among multiple professionals can take place.

Can Professional Identity and Care Competencies Support Trust-Relationships?

Trust toward other professionals as well as towards patients directly and indirectly influences healthcare workers’ motivation in providing care (Okello and Gilson 2015 ). The research indicates that nurses sustain relationships of mistrust with physicians and patients. This originates in the hierarchal medical society, the institutional organization and the care legislation. Nonetheless, nurses’ limited professional identity and insufficient professional care competencies are revealed as additional reasons which may frustrate communication with a care team and may further lead to mistrust between nurses, physicians and patients.

Pullon ( 2008 ) articulated that the identification and separation of vocational and business roles and the development of a professional identity form the basis for the development of trust in the nurse–physician relationship. In home-care practice, nurses identified their professional roles as mediators and advocates in diabetes care. These two roles are indispensable in the home-based care context because they support inter-professionalism as a platform for the exchange of information. Some studies hold the same point of view and reason that nurses and patients have a closer relationship compared to other healthcare professionals because nursing care occupies an “in between” position in the organization of the public response to the patients’ needs. Nurses act to follow up and address their needs appropriately (Rich 2008 ). Nurses’ role as mediators means not only delivering messages from patients to physicians; it consists of the missions to create efficient communication, to share care plans and to identify problems to the care team. Likewise, nurses’ role as advocates involves conveying patients’ needs in meaningful ways. That is to say that nurses should not only be able to protect patients’ rights when something goes wrong, but should also be able to establish a nourishing and safe caring environment. These expanded missions have to be taken into account when we talk about “good care” in home-based diabetes management.

Following Pullon’s argumentation, ( 2008 ) “[p]rofessional identity is related to the demonstration of professional competence , in turn it is related to the development of mutual inter-professional respect and enduring inter-professional trust”. Nurses’ professional competencies influence inter-professional trust and patients’ trust as well. On the basis of the research data, unequal trust-relationships between patients, nurses and physicians can be observed in home-care practice. Rørtveit and her colleagues ( 2015 ) explained that patients’ trust in nursing is dependent on the nurses’ knowledge, on their level of commitment to dialogue and to creating and developing the relationship and on contextual issues. Yet, the research conveyed a message that nurses are becoming aware of their insufficient knowledge and care competencies in diabetes care. Smith ( 2012 ) identified that, “[a]ntecedents to personal and external motivations include the attribution of and integrating of knowledge into practice, experience, critical thinking, proficient skills, caring, communication, environment, motivation, and professionalism”. According to his argumentation, issues such as confidence, safe practice and holistic care belong to the caring competencies as well (Smith 2012 ). In the current healthcare environment, nurses are too overwhelmed to develop the expected competencies and meet the expanded professional roles.

Responding to the argumentation by Maio ( 2009 , p. 32), “[o]ne big problem in modern medical care is that healthcare workers are not reflecting and not able to think about themselves, their identity and the reason why they provide care” (Ein großes Problem der modernen Medizin ist somit ihre Unreflektiertheit, ihre Unfähigkeit, über sich selbst, über ihren Ursprung, über ihre Identität nachzudenken). Encouraging nurses to face ethical dilemmas and to reflect on their nursing work is getting more and more important in care practice. Improving the theoretical and practical training in diabetes care during nursing training and further education programmes may offer a possibility of change. A nourished nursing practice has to be established, wherein nurses have time and space to keep trying to achieve improvements in care. Well-structured institutional regulations for diabetes care may additionally offer legal support for nursing work. Footnote 10 It is also necessary to encourage nurses to get a clear understanding of external influences related to nursing education, health legislation and health policy. As Tronto ( 2010 ) advocated to healthcare professionals, “recognition and debate/dialogue of relations of power within and outside the organization of competitive and dominative power and agreement of common purpose” should allow nurses not only to recognize the ethical tensions raised in care practice and to learn to reflect on them but also to be able to push a dialogue with the healthcare team, the healthcare system and society. There will be new roles for nurses to grow into and to fill in their practice.

Nurses work within a healthcare system oriented towards economic efficiency . Nurses are, on the one hand, limited by the business approach of serving “customers ” and, on the other hand, motivated by the professional awareness of offering medical care for “patients”. Nurses attempt to provide patients’ with care regulated by their professional identity while satisfying customers’ expectations that are dominating the healthcare market. When customer sovereignty and patients’ autonomy are emphasized, nurses often have to accept a compromise against their own will. The nursing professional awareness hardly translates into care practice and ethical dilemmas may therefore occur.

Within the hierarchical German medical care system, nurses experience responsibility without authority in the care field. Without authority , nurses find it difficult to engage in teamwork while they are carrying out care responsibilities. Relationships of mistrust towards the care team also come with this. Additional reasons arise from limited professional care competencies and a narrow professional identity. Nurses are overwhelmed in diabetes care, especially in dealing with ethical tensions. To improve personal and professional growth for all healthcare workers and to enhance patients’ engagement in disease management is essential. It is also important to create a nourishing and safe care environment wherein professional awareness can be encouraged and acted upon by sharing doctoring and responsibility. The insights gained through this research may assist nurses and other healthcare professionals in reflecting on home-based care teamwork and improving diabetes care in general.

Robin and his colleagues ( 2008 ) indicated that patient-centered care (PCC) promotes adherence and leads to improved health outcomes. The fundamental characteristics of PCC were identified as patient involvement in care and the individualization of patient care. Effective PCC practices were related to communication, shared decision making and patient education. However, our research findings showed that an effective PCC is difficult to carry out in practice because of the commercial healthcare market, insufficient competencies on the part of nurses and the hierarchy that arises when patients’ satisfaction is used as the indicator to measure the quality of care.

Our research does not aim to measure the ethical competencies of healthcare workers or to resolve the ethical tensions that deeply affect the hierarchy. The purpose of this paper is to offer support for healthcare workers to get a better understanding of the ethical tensions in diabetes care by reflecting on the interactions within a healthcare team, as well as enhancing the sensibility of healthcare workers towards these tensions and inspiring them to think about what can be done in care practice.

The Ethics Committee of the University Hospital Freiburg (EK-Freiburg 43/12) approved the study and the participants received the usual assurance about anonymity, confidentially and the right to withdraw at any point.

Research questions were asked like: “Can you tell me how you experience caring for patients with diabetes?”; “How do you experience working together with other healthcare professionals such as physicians?”; “Can you tell me an example of how you have reacted to a conflict in care practice?” and “Can you describe what good diabetes care is for you?”

The German healthcare is organized as a ‘Third Party Payer System’. Patients don’t pay healthcare providers directly for their medical treatment within this healthcare system. The healthcare providers calculate the cost of medical services and then receive payments from healthcare insurance (Tscheulin and Dietrich 2010 ). Thus, patients have a customer status in relation to the health insurance as well as to the service provider, but their “needs” have been considered more often than their “demands” (Raspe 1999 ; Tscheulin and Dietrich 2010 ). Nursing care has been talked about as customer care according to the regulations of healthcare insurance as well (Raspe 1999 ). However, from the perspective of patient care, patients are not customers because their status has been greatly reduced by illness or injury and their sovereignty is therefore limited (Duttweiler 2007 ; Maio 2009 ; Raspe 1999 ; Torpie 2014 ). It is worth to take a detailed look at how healthcare workers think about their care receivers and how their understanding of care receivers influences their care activities in the field.

In the edited volume, “Socio-material will-work”, Annelieke Driessen elaborated how healthcare workers applied three kinds of will-work as alternative ways to deal with the wanting of patients to provide good care in the dementia care context.

Consumer sovereignty is a phrase often translated as ‘the customer is king’ and it lays the emphasis on the rights of consumers . Ryl and Horch ( 2013 ) indicated that sovereignty is usually presented in healthcare as citizen- and patient-centred care in order to improve the quality of care . In Germany, medical care responds to patients’ needs through patient-centred care. In the past ten years, the concept of citizen- and patient-centred care has further developed in the legal and political spheres in the German healthcare system (Ryl and Horch 2013 ).

Björn Freter took a philosophical view of caring for the whole person to discuss the norms for diabetes care. Please see the edited volume (Chapter “ Nursing as Accommodated Care. A Contribution to the Phenomenology of Care. Appeal—Concern—Volition—Practice ”).

ANA is the acronym for the American Nurses Association. The Code of Ethics for Nurses was developed as a guide for carrying out nursing responsibilities in a manner consistent with quality in nursing care and the ethical obligations of the profession (ANA 2008 ).

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Liu, PY., Kohlen, H. (2018). Tensions in Diabetes Care Practice: Ethical Challenges with a Focus on Nurses in a Home-Based Care Team. In: Krause, F., Boldt, J. (eds) Care in Healthcare. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-61291-1_11

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Diabetes is a chronic metabolic disorder that impacts physical, social and mental including psychological well-being of people living with it. Additionally, psychosocial problems that are most common in diabetes patients often result in serious negative impact on patient's well-being and social life, if left un-addressed. Addressing such psychosocial aspects including cognitive, emotional, behavioral and social factors in the treatment interventions would help overcome the psychological barriers, associated with adherence and self-care for diabetes; the latter being the ultimate goal of management of patients with diabetes. While ample literature on self-management and psychological interventions for diabetes is available, there is limited information on the impact of psychological response and unmanaged emotional distresses on overall health. The current review therefore examines the emotional, psychological needs of the patients with diabetes and emphasizes the role of diabetologist, mental health professionals including clinical psychologists to mitigate the problems faced by these patients. Search was performed using a combination of keywords that cover all relevant terminology for diabetes and associated emotional distress. The psychological reactions experienced by the patient upon diagnosis of diabetes have been reviewed in this article with a focus on typical emotional distress at different levels. Identifying and supporting patients with psychosocial problems early in the course of diabetes may promote psychosocial well-being and improve their ability to adjust or take adequate responsibility in diabetes self-management – the utopian state dreamt of by all diabetologists !.

I NTRODUCTION

Diabetes is a serious and complex metabolic disorder with the prevalence reaching endemic proportions over the past few decades. According to the International Diabetes Federation, there are 382 million people worldwide affected by diabetes, and it is expected to reach 592 million by 2035.[ 1 ] Among them, India alone has 65.1 million people with diabetes in the age group of 20–79 years.[ 1 ] With India approaching numbers predicted to be attained by 2030, in 2020 itself, India is sitting on a diabetic volcano!

Majority of the guidelines on diabetes care focus on the medical aspects of initial management without addressing the psychological needs of the patient.[ 2 ] Although many people with diabetes cope well and live healthy lives, several studies, including The Diabetes Attitudes, Wishes, and Needs study, emphasized that psychological support in this group of patients is under-resourced and inadequate, resulting in poor quality of life (QoL) and reduced general well-being.[ 3 , 4 , 5 , 6 , 7 , 8 , 9 ] It is often difficult for many to accept that they have to take drugs invariably throughout their life, resulting in poor treatment adherence and diabetes self-management.[ 2 ] These psychosocial problems can eventually develop into depressive or other psychological disorders that are associated with poor self-care behavior, poor metabolic outcomes, increased mortality, functional limitations, increased health-care cost, loss of productivity, and reduced QoL.[ 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 ] Emotional and psychological needs of the patients with diabetes are compromised, when personal efforts to meet these challenges fail to succeed as anticipated, or when the complications of diabetes take their toll on physical and mental (psychological) health.[ 18 ]

Evidence indicates that diabetes[ 11 , 19 ] and its complications are strongly associated with psychological and psychiatric problems. These include depression,[ 20 , 21 , 22 ] poor-eating habits,[ 23 ] and fear of hypoglycemia.[ 24 , 25 ] Moreover, patients with type 2 diabetes mellitus (T2DM) also have a two-fold greater risk for comorbid depression compared to healthy controls, hampering the QoL of patients.[ 26 , 27 ] Research also indicates that patients with diabetes suffer from high levels of diabetes-specific emotional stress.[ 28 , 29 ] This is associated with functional impairment, poor adherence to exercise, diet and medications, and inadequate glycemic control.[ 11 , 30 , 31 , 32 ]

In view of this, it is important to identify and support patients with psychosocial problems early in the course of diabetes as it may affect their ability to adjust or take adequate responsibility for self-care.[ 33 ] Addressing the psychological needs results in improvement on diabetes outcomes in terms of better glycemic control[ 34 , 35 ] and reduced comorbid psychiatric disorders such as depressed mood.[ 36 ]

Effective self-management of diabetes is a critical step in achieving healthy and satisfying life. However, it requires a great deal of personal motivation and change in behavior. The importance of psychological interventions in diabetes management has been identified by organizations such as Scottish Intercollegiate Guidelines Network,[ 37 ] The National Institute of Health and Clinical Excellence,[ 38 ] and Institute for Clinical Systems Improvement.[ 39 ] These organizations have incorporated evidence-based guidelines for psychosocial care in adults with diabetes.

The aim of this review is to:

• Provide an overview on the psychological needs among people with diabetes
• Address the psychological reactions in patients with diabetes by focusing on different levels of emotional distress.

An attempt has been made to understand the physiological role of stress in the development of diabetes and to establish a relationship between psychiatric disorders including depression and anxiety to the clinical presentation with diabetes. Finally, a brief overview on different psychological interventions for improved self-care behavior has been discussed.

M ETHODOLOGY

An extensive search was performed in databases of medical and scientific literature including, but not limited to, “PubMed,” “CrossRef,” “EMBASE,” and “Cochrane Library” with search terms “diabetes mellitus,” “psychosocial support,” “psychological,” “psychiatric,” “anxiety,” “depression,” and other terms related to the current topic of research. Our search criteria identified previous randomized control trials, prospective observational studies, and retrospective case series, reflecting a balance between designed coordinated studies and real-world clinical data. Studies with significance for the current research question were qualitatively graded for inclusion in the current review. Studies conducted in recent years and published in the last 15 years are primarily included in the current review. The review aimed at presenting a wide-ranging discussion on the current topic, and hence, no specific data synthesis was carried out.

Pyramid model

Given that emotional and psychological needs of people living with diabetes are complex, it is important to understand the range of psychological problems in any patient population or individual. The NHS Diabetes and Diabetes UK's summary of psychological needs in diabetes group advocated a tiered model of emotional and psychological support known as the “pyramid of psychological need.”[ 40 ] This “pyramid model” illustrates the diversity of need and the broadly inverse relationship between prevalence and severity of need which can have a profound effect on QoL and psychological well-being of a patient. From a population perspective, this model can be used to describe differences in need against differences in variables such as type of diabetes, duration of the condition, lifespan, and sociodemographic characteristics. Boundaries between the levels of the pyramid are not absolute as any person may move up or down these levels at any point in his/her life.

Based on the severity of psychological needs of the patient, the model has five levels (i.e., Level 1 to Level 5) [ Table 1 ] as described below:[ 18 ]

Role of diabetologist and mental health professionals based on severity level of difficulties faced by persons with diabetes mellitus

• Level 1 is associated with general difficulties coping with diabetes and its perceived consequences
• Level 2 is associated with more severe difficulties with coping, causing significant anxiety, or lowered mood with impaired ability to self-care as a result. General and diabetes-related chronic stress at Level 1 can lead to symptoms of anxiety and depression at Level 2[ 28 , 41 , 42 , 43 ]
• Level 3 is associated with psychological problems that are diagnosable and can be treated through psychological interventions alone, for example, mild and moderate cases of depression, anxiety states, and obsessive/compulsive disorders[ 18 ]
• Level 4 covers more severe psychological problems that are diagnosable and require biological treatments, medications, and psychologist consultation and interventions[ 18 ]
• Level 5 is associated with severe and complex mental illness/disorder requiring psychiatric intervention.[ 18 ]

Concept of stress in diabetes

Psychological stress has been implicated as a chief causative factor for psychosomatic disorders. Stress is defined as “the consequence of the failure of an organism – human or animal – to respond appropriately to emotional or physical threats, whether actual or imagined.”[ 44 ] Stress response can be defined as a cognitive, emotional, physical, or behavioral level that can have serious, negative consequences on the body upon long-term activation.[ 44 ] Interestingly, stress has long been suspected as having important effects on the development of diabetes through different pathways via behavioral and physiological mechanisms. Behavior-induced emotional stress was associated with unhealthy lifestyle behaviors, such as inadequate-eating behaviors in terms of quality and quantity of food, low exercise levels, smoking, and alcohol abuse.[ 45 , 46 ] On the other hand, physiological, emotional stress is associated with long-term activation of the hypothalamic–pituitary–adrenal axis and the sympathetic nervous system, resulting in chronic stress reactions, including depression, anxiety, mood disorders, and sleep disturbances.[ 47 , 48 ]

Gonzalez in diabetes care, 2011 defined diabetes distress (DD) as the unique, often hidden, emotional burdens and worries that a patient experiences when they are managing a severe chronic disease such as diabetes. High levels of DD are common and distinct from clinical depression. DD screening tool is a unique 17-question survey used for assessing emotional burden, physical-related distress, regimen-related distress, and interpersonal distress. Such tool is quite handy in understanding patient's emotional need in the overall management of diabetes.

Relationship of psychological stress factors to the clinical presentation of diabetes

The biopsychosocial model, which describes psychological stress as a state of normal tension, preoccupation, and agitation, defines it as a relationship between environmental parameters and individual processes of perception and coping with stressors.[ 49 ] Under stress, numerous metabolic changes including vasoconstriction in the peripheral vascular system, increased heart rate, increased muscle activity, and increased production of stress hormones serve to elevate blood glucose levels for extra energy required to combat stress.[ 50 ] Besides, they have also been associated with increased feeling of vulnerability and activate body to the “fight–flight” response.

The response of a diabetic patient to stress is not uniform across all patients.[ 50 ] In patient with type 1 diabetes mellitus, the effects of stress are influenced by aberrant regulation of stress hormones and relative presence of insulin at the time of stress.[ 51 ] This can also be attributed to the presence of autonomic nervous system abnormalities associated with diabetic neuropathy, as well as individual psychological differences.[ 51 ]

The association between psychological stress and diabetes outcomes is evident in several cross-sectional and longitudinal studies. Several studies have demonstrated that emotional distress in patients with diabetes is associated with poor glycemic control,[ 11 , 52 ] deficit in self-care behavior,[ 53 ] and adverse diabetes outcomes.[ 54 ] Studies have suggested that nonadherence to treatment may represent an important pathway between emotional distress and poor diabetes outcomes.[ 55 ] A longitudinal study by Gonzalez et al . (2008b) demonstrated positive correlation between depressive symptoms and poor medication adherence and diabetes self-care after 9 months.[ 56 ] Similarly, another study has shown that persistent depressive symptoms were associated with poor self-management in terms of diet and exercise over the subsequent 5 years.[ 57 ] On the contrary, reduction in depressive symptoms was associated with improved glycemic control.[ 11 ]

In some reports, psychological factors such as self-efficacy,[ 58 ] self-esteem,[ 59 ] diabetes coping,[ 60 ] and social support[ 61 ] were found to be associated with good treatment adherence and glycemic control; whereas factors such as stressful life events,[ 62 ] daily environmental stressors,[ 63 ] and diabetes-related distress[ 10 ] were associated with poor glycemic control and nonadherence to treatment. Depression and anxiety have also been shown to be associated with increased hyperglycemia.[ 11 , 64 ] Furthermore, other studies have also demonstrated that psychological factors may contribute to metabolic,[ 65 ] gastrointestinal,[ 66 ] and sexual dysfunction[ 67 ] along with neuropathic[ 68 ] symptoms in patients with diabetes. A study by Lustman et al . evaluated the relationship between depression and diabetes symptoms and concluded that diabetes symptoms are more likely to be associated with depression than to conventional markers of glucose control.[ 65 ] Another study revealed that each group of gastrointestinal symptoms was significantly associated with psychiatric illness ( P < 0.01 for each) than with peripheral neuropathy ( P > 0.2 for each).[ 66 ] Furthermore, Lustman and Clouse demonstrated that psychiatric illness (generalized anxiety disorder and depression) was significantly ( P < 0.01) associated with sexual dysfunction, irrespective of the effects of neuropathy.[ 67 ] Overall, these findings suggest that psychological factors have a great impact on diabetes outcomes and hence should be considered in casual speculations.

Psychological reaction in patients with diabetes

The patient's perception about the seriousness of diabetes will affect the way they cope with the disease.[ 69 ] Several psychological factors as discussed earlier contribute to affect the emotional and psychological well-being of a person with diabetes. These include degree to which an individual accepts his/her diagnosis, how the individual adjusts to the demands of self-care routine, and finally how he/she copes with progression of the condition, which potentially includes the development of diabetes-related complications.[ 70 ] However, considering that living with diabetes is a lifelong stress and requires dealing with psychological issues, the psychological reactions of patients towards diabetes can be categorized under four basic levels of emotional distress. The psychological factors and reactions with negative outcomes in patients with diabetes have been summarized in Figure 1 .

Psychological factors and reactions with negative outcomes in patients with diabetes

Emotional reactions at the time of diagnosis

Beeney et al . found that patients were distressed at the time of diagnosis with emotions ranging from anxiety, shock, anger, or denial.[ 71 ] Similar results were observed in other studies.[ 10 , 72 , 73 , 74 , 75 , 76 ]

It is a common response against some restrictive or uncomfortable situation and appears when diagnosed with diabetes. As a defense measure, patient may refuse to believe in diagnostic method or the report and try to avoid the long-term complications. In particular, denial interferes with the patients’ ability to monitor their condition, take initiative in seeking treatment, and manage their illness. A crucial aspect regarding denial in T2DM patients as a first reaction may also be explained in the absence of significant physical symptoms or complications in the early stages of T2DM.

It is a strong feeling of resentment, displeasure, and hostility that often arises in response to a perceived wrongdoing. Once diagnosed with diabetes, the patient may express his/her anguish on the development of such unexpected clinical condition. In addition, the person may get frustrated as to why he/she has developed diabetes. Such emotional state could interfere with the natural coping mechanism of the body which may further deteriorate the condition.

It is a natural emotion to a wrong work and often arises after being diagnosed with diabetes. Feeling of guilt may be realistic or unrealistic. These could be managed by answering questions such as ‘”Why am I feeling guilty?,” “Is my guilt realistic?,” “What should I do when I am feeling guilty?,” “Do I have to worry too much,” or “should I try to make positive changes?”

Sorrow/depression

It is a normal response to diabetes which may result from sadness and feeling of loss. Depression is often characterized by sustained changes such as sleep, fatigue, appetite disruption, and disinterest in daily activities over a period of weeks. It may interfere with diabetes self-care and can be managed by counseling with the patient and engaging him/her in fun activities.

This may take time up to a year, but finally, the person accepts his/her situation and prepares himself/herself for living with diabetes. However, this step requires patience, assistance from others, full understanding of diabetes, and its management approaches to manage diabetes into his lifestyle.

Diabetes distress

The National Diabetes Service Scheme Australia defines DD as the emotional burden of living with and managing diabetes. It is a unique, often hidden, emotional burdens and worries that a patient experiences when he/she is managing a severe chronic disease such as diabetes. The needs of the patient during the DD have to be assessed and managed at self, family and friends, and the care provider. The DD learning center of St Johns River Rural Health Network identified the critical information for different stakeholders.

• Feel overwhelmed with the demands of self-management
• Feel frustrated, fatigue, anger, burn out, and poor mood
• Difficult to keep up with complicated routine
• Make it difficult for self-management the control of blood sugar.

Family and friends

• Inability for the family members to understand the feelings of the patient makes the patient further burdensome
• Food differentiation and restriction of food by family members may lead to further distress
• Absence of conducive discussion with family and friends would make the situation worse
• The communication by the patient with the family member may be difficult as the patient does not want to make the family members uncomfortable.

Caregivers/physician

• Health-care providers (HCPs) are driven by fear of diabetes complications and not maintaining right hemoglobin A1c (HbA1c)
• The fear produces behavior in HCPs may interface with diabetes self-management
• The common reaction of the HCP is to label the patient as noncompliant to treatment.

Phobia reactions

Although insulin therapy remains the mainstay for the management of diabetes, often nonadherence to insulin therapy is observed among patients with diabetes. The problem of treatment adherence can be linked to psychological barrier associated with fear of needles/injections, insulin initiation, hypoglycemia late complications, and obsessive behavior or overdosing.[ 77 , 78 ] Anxiety related to fear of insulin injection is common among people with diabetes and is reported high among insulin-naïve patients.[ 79 ] It has been observed that an extreme level of fear of self-injection is associated with high diabetes-related distress, poor general well-being, and psychological comorbidity, as well as poor adherence to the diabetes treatment regimen.[ 79 , 80 ] Moreover, individuals with diabetes may experience unpleasant symptoms and negative consequences associated with hypoglycemia. This may result in anxiety or even a fear of hypoglycemia that can have significant clinical implications for diabetes management.[ 81 ] Patients with these conditions may miss monitoring of blood glucose levels or administration of insulin dose in severe cases.

Depression and anxiety

Diabetes and psychiatric disorders share a bidirectional association influencing one another in multiple ways and different patterns.[ 2 , 82 ] They can present as independent conditions with parallel pathogenic pathways, or one may manifest during the course of the other and contribute to the pathogenesis of the earlier. In another case, psychiatric disorders may represent as an independent risk factor for the development of diabetes or could be an overlap of the clinical presentations or emerge as a side effect of the medication used to treat psychiatric disorder or vice versa. Psychiatric disorders represent a pattern of behavioral or psychological symptoms that impact the life of an individual. Although psychiatric disorders create suffering for the person experiencing these symptoms, depression is one of the most studied disorders and has been shown to be associated with significant negative impact on patients with diabetes.[ 83 ]

Depression is the most common psychiatric disorder in people with diabetes, with an estimated 41% of patients suffer from poor psychological well-being and elevated rates of depression and anxiety disorders.[ 18 ] People with type 2 diabetes have 24% of higher risk of developing depression[ 84 ] and therefore the co-morbid conditions of depression and diabetes needs a careful attention.[ 85 ] Data also indicate that 13% of all newly diagnosed T2DM cases in the US are associated with clinical depression.[ 86 ] A systematic review by Ali et al . (2006) reported that the prevalence of depression was significantly higher among patients with T2DM than those without diabetes (17.6% vs. 9.8% odds ratio = 1.6, 95% confidence interval 1.2–2.0).[ 87 ] The bidirectional relationship between depression and diabetes was evidenced from a meta-analysis by Mezuk et al ., who reported that patients with depression have ~ 60% increased risk of developing T2DM.[ 88 , 89 ] Physicians caring for individuals with type 2 diabetes must be aware of possible coexisting depression, which must be identified and managed appropriately by a combination of lifestyle advice, antidepressant medicines, and psychotherapy.[ 114 ]

Anxiety is another common psychological disorder in patients with diabetes.[ 90 ] Evidence from a systematic review reported higher prevalence of anxiety in diabetes patients with 14% of patients suffering from generalized anxiety disorder, 27% with sub-syndromal anxiety disorder, and 40% with elevated anxiety symptoms than those without diabetes.[ 91 ] In another study, patients assessed for the clinical features of anxiety using Hamilton Rating Scale for Anxiety (HRSA) and reported higher HRSA scores in the depressed group compared to those in nondepressed group (21.07 ± 5.44 vs. 6.88 ± 3.43).[ 92 ]

Other psychiatric disorders in diabetes

• Delirium is another psychiatric disorder associated with diabetes and characterized by expression of hypoglycemic episodes or diabetic ketoacidosis.[ 93 ] It is associated with increased hospital stay, increased cognitive and functional deterioration, and morbidity and mortality.[ 82 , 94 , 95 ] In addition, outcomes such as disorientation, confusion, and altered sensorium are often seen in these patients. Early identification is crucial for the outcome of the disease. Close supervision and supportive care remain the main stay of treatment[ 82 ]
• Eating disorders are another set of psychiatric disorders commonly observed among people with diabetes.[ 96 , 97 ] These disorders can have significant impact on glycemic control and increase the chances of diabetes complications.[ 23 ] In a study of 714 patients with diabetes, it was reported that 9.7% of the patients had night eating syndrome (NES).[ 98 ] Moreover, these patients were likely to be obese and depressed with poor glycemic control and higher incidence of diabetes complications[ 98 ]
• Depression, obesity, and type 2 diabetes occur together more often than by chance. Epidemiological and metabolic evidence suggests common pathogenic pathways among the three conditions. However, the cause–effect relationship is less clearly established: depression could lead to obesity and diabetes through lifestyle factors such as sedentary habits, overeating and poor self-care; diabetes, on the other hand, could be associated with depression due to the major emotional, social, medical, and financial burdens placed for its management. In addition, use of antidepressant medicines, particularly the newer generation agents, increases body weight and induces insulin resistance and thereby T2DM[ 114 ]
• There is a close association between schizophrenia (SZ) and diabetes.[ 99 ] Evidence from a large metabolic monitoring database from urban mental health facility reported that depending on demographic variables, such as ethnicity and cigarette smoking, 20%–30% of patients with SZ will diabetes or prediabetes during the course of psychiatric treatment.[ 100 ] The prevalence of impaired glucose tolerance in these people may be as high as 30%, depending upon the age[ 101 ]
• There is evidence showing that insulin resistance may be the link between affective disorders and Alzheimer's disease.[ 115 ] Insulin is vital for glucose utilization and neuronal survival in the central nervous system. Fluctuating glucose levels as a result of dysglycemia can result in neuronal apoptosis and formation of neurofibrillary tangles, the hallmark of Alzheimer's disease.

P SYCHOLOGICAL T HERAPIES /S TRATEGIES IN THE T REATMENT OF D IABETES

Effective management of diabetes requires complex, continual, and demanding self-care behavior. Considering that psychosocial impact is a strong predictor of mortality and morbidity in diabetes patients, integrating psychosocial aspects at all levels of diabetes management is important for better treatment adherence to achieve good glycemic control.[ 102 , 103 ] It is well known that psychosocial stress is common in subjects with diabetes mellitus.[ 116 ] Keeping in mind the importance of psychosocial factors in the management and growing burden of diabetes, there is a need for development and implementation of effective, well-evaluated psychosocial interventions/therapies to assist people in dealing with the daily demands of diabetes.[ 103 ]

It has been observed that addressing psychological needs improves HbA1c by 0.5%–1% in adults with T2DM.[ 34 , 35 ] Moreover, most physicians believe that psychological problems are associated with worse outcomes and have prompted the establishment of guidelines to ensure that proper psychological support is provided to the patients and negative emotions that arise in living with diabetes are adequately managed.[ 2 , 3 ] Psychosocial interventions such as cognitive behavioral therapy,[ 104 , 105 ] motivational therapy,[ 106 ] problem-solving therapy,[ 2 , 107 ] coping skills training,[ 108 , 109 ] and family behavior therapy[ 110 , 111 ] have all shown to improve the treatment adherence and achieve good glycemic control. Considering these facts, psychosocial interventions have been recognized as an integral part of diabetes care.[ 112 , 113 ] Such interventions are very useful to improve glycemic control and self-care behavior, thus reducing the risk of complications and improving the QoL of the patient with diabetes.

Again, to bring the psychological intervention into the existing treatment regimen, few changes are important at the health-care delivery points;

• It is important to incorporate psychological screening and management at every level of diabetes care
• It is important to sensitize health-care professionals, persons with diabetes, and their family members about the importance of psychological screening and intervention along with other advised treatment
• There must be an advocacy program at the community level to improve the awareness level of psychological well-being of persons with diabetes.

C ONCLUSION

The relation between diabetes and psychosocial disorders is multifactorial. Their coexistence can impact glycemic control, self-care behavior, and QoL. The emotional and psychological needs of the patients with diabetes are often compromised when personal efforts to meet these challenges fail to succeed, resulting in increased risk of diabetes-related complications. Such complications lead to reduced QoL, increased mortality, increased health-care costs, and lost productivity. Addressing the psychosocial needs of the patient would overcome the psychological barrier associated with adherence and self-care, while achieving long-term benefits in terms of better health outcomes and glycemic control. Thus, increased understanding of the psychological aspects of the patient with diabetes would allow clinicians to formulate strategies focusing on the improvement in diabetes outcomes and reduction of disease burden.

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Conflicts of interest.

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