Sot. Sri. Mrd. Vol. 21. No. 12. pp. 1329-1334. 19X5 Printed m Grear Britan

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THE PRODUCTION AND EFFECTS OF UNCERTAINTY WITH SPECIAL REFERENCE TO DIABETES MELLITUS

CHRKWNE MASON Department of Community Medicine. The Medical School, Ninewells Hospital, Dundcc. Scotland

Abstract-Ninety-one patients of one consultant physician were followed up for I year. All were newly diagnosed as suffering from diabetes mellitus. Patients were found to be distressed by continuing uncertainties about the nature of the disease from which they suffered and about important aspects of self-management required of them. The ‘doctor-centered’ style of communication adopted by health professionals was not conducive to the resolution of these uncertainties.

INTRODUCTION

“That which is uncertain is doubtful or problematic: it often involves danger through an inability to predict or to place confidence in the unknown” [I].

Several writers have identified the particular difficulties encountered by patients and their families where uncertainty is inherent in an illness. Gunnyeon [2] points to the uncertainty which is an ever present feature of cystic fibrosis. It arises from prognostic difficulties and raises in the minds of parents such questions as whether the child will be alive at Christ- mas to play with a new bicycle. An attack of migraine often is unpredictable and Macintyre and Oldham [3] describe the fear engendered by the resulting uncer- tainty which has a profound effect on the way lives can be organized. Davis [4] and Burnfield [5] write of the practical problems which develop contingent on uncertainty in multiple sclerosis. In a study of patients suffering from rheumatoid arthritis, Weiner [6] found that “the total absence of predictability” accounted for most of the variation in the social and psychological problems of living with the condition.

This paper explores the phenomenon of uncer- tainty in relation to diabetes mellitus. The hallmark of this disease is control which demands of patients, at the verb least. certainty of understanding with respect 10 an often complex and rigorous programme of self-management.

THE STUD\

The data reported in this paper were obtained in a study initiated in response to a request for assistance made by a consultant physician responsible for the care of persons suffering from diabetes. His request arose from a concern with low levels of compliance seen by him to be caused. at least in part. by communication failure at the out-patient diabetic clinic. The physician diagnosed as a symptom of this failure his own lack of information about factors in patients’ lives interfering with or contributing to their abihty to carry out required management regimes.

Following extended discussion, time spent in ob- serving clinic routines and speaking with patients, two study aims were defined.

(I) To identify the ways in which patients react to the diagnosis and subsequently cope with manage- ment.

$2) To identify factors in communication between staff and patients at the out-patient clinic which might be interfering with the mutual transfer of information essential to self-care.

Sample

A sample of 91 consecutive patients attending the diabetic out-patient clinic was collected over a period of 30 weeks. All were attending for diagnostic confirmation, most having been referred by genera1 practitioners. From the week of their entry to the study, every patient was followed up for 1 year.

Procedures of investigation and sources of data

In the whole study, six procedures of investigation and data sources were used: anxiety tests, physician assessments, tape recordings, hospital records, home interviews and knowledge tests. Results presented here derive from the last four of these data sources.

Tape-recordings. On the occasion of their first visit to the diabetic clinic, every patient’s meeting with the physician and dietitian was recorded on audio tape after permission had been sought from patients for this to occur.

Each tape was played through twice in order to form a preliminary impression of what was occurring. Notes were taken of these impressions and also of the length of interactions.

All tapes were transcribed and several photocopies made of them. One copy was kept free of any mark other than the patient identification number. A sec- ond copy was used for detailed annotation according to pre-arranged categories adapted from the systems of interaction analysis designed by Bales [7] and by Byrne and Long [8]: e.g. question asked, information given, reassurance offered. irritation shown and so on. The other copies were used for splicing. Thus, every instance of a particular category was pasted on

1330 CHRISTINE MASON

a sheet for inclusion in labelled files. Each such example was identified by the patient number in order that reference could be made to the original context in which it occurred.

Using these methods, it was possible to analyse data both quantitatively and qualitatively. Thus the type of inputs each of the two participants made during an interaction were analysed in terms of the number and content of questions asked, answers and information given. Participation during an interaction was measured by calculating the proportion of inputs each party made to a conversation. The styles of communication adopted by the physician and dietitian were compared; variation in styles as each health professional met with different patients was examined.

Particular attention was paid to the comprehen- sibility of information given to patients about the diagnosis and management of diabetes. Explanations were examined in order to assess the number of separate items of new information given and the manner in which new concepts were introduced in- cluding ordering of information and vocabulary used.

Hospital records. From the time of their first clinic attendance until the end of the end of the study period a year later, the following information was abstracted for each patient from hospital records: date and time interval to next appointment; ideal and actual weight; weight and difference between ideal and actual weight; blood pressure; reported episodes of hypoglycaemia; patients’ reported well-being; rec- ommended diabetic therapy and changes in it; other diseases, conditions and medications; physician’s comments on progress.

Interviews. Interviews took place in patients’ homes 2 weeks after diagnosis and 50 weeks later. Questions were asked on the basis of preliminary clinic obser- vations and interviews with 30 patients visited during the preliminary phase of research planning. In addi- tion, the schedules were pre-tested on 20 patients, 8 with new diagnoses and 12 with longer established disease who were collected from two consecutive new clinics and one follow-up clinic before the beginning of the study.

Table I. Demographic charactertstics and type of diabetes buffered by patients at entry to study (N =91)

NO. %

tiender Male 51 56.0 Female 40 44.0

Age 20 39 16 Il.6 40 59 39 42.X 60 + 36 39.6

Uean 55 years Mantai \tiltuh

Marrted 74 Xl.3 Wldowcd II 12.1 Separukd divorced 3 3.3 Smplc 3 3.3

Dlabete\ type In\ubn dependent I7 IX.7 Norwnauhn dependem: ?I 23 I

wIthIn IO’::, of 1.B.W * Non-insulin dependent: 53 5x.2

> 10% of I.B.W.

*I B.W = Ideal hody welpht decided by phyww from i~c~uanill tahlr\.

Final schedules covered personal details, family and social networks, work and leisure. Particular emphasis was placed on patients’ reactions to the disease, how they managed the regime and their information requirements. One hour was usually sufficient for the completion of the interview sched- ules. A further half-an-hour was devoted to the tests of knowledge and anxiety administered on the same occasions.

Knowledge tests. Question areas in the two knowl- edge tests were decided as a result of notes taken during the period of preliminary observation at the clinic and on the basis of leaflets given to all patients. In addition, the physician and dietitian reviewed every phase of question construction so that the eventual tests would be appropriate to the instruction given on self management.

RESULTS

Patients’ Characteristics and Required Management Regimes

The demographic characteristics of patients and the types of diabetes they suffered are shown in Table 1. Of those 74 patients not needing insulin, 66 were given oral hypoglycaemic medication and 8 were prescribed only a special diet. Dietary regulation was required of all patients but the form of regulation varied according to weight at first attendance. Weight loss was considered an important part of disease management for the 53 patients who were 10% or more in excess of actuarial ideal weight. Restriction of calories as well as regulation of carbohydrate was required of these patients.

Patients’ Uncertainties

Uncertainty concerning disease label

At second interview, it was found that patients’ understanding of diabetes was at variance with that of the physician. Four aspects of the disease concept were differently perceived. Data leading to this con- clusion are presented below under the headings of severity, insulin requirement, cure and causation and are summarized in Table 2.

Severity. When giving the news of diagnosis to the 64 patients not requiring insulin, the physician invar- iably used the limiting adjective ‘mild’. But regardless of whether insulin was being used or not, 76 patients perceived diabetes to be very serious condition. For non-insulin dependent patients. mild and diabetes were contradictory terms.

Insulin requirement. All patients believed that diabetes was synonymous with the requirement to

Table 2. Relations between physuan’s explanatton,instruction and patlents‘ beliefs about diabetes

Dr‘s IIISII-UCIIOIIS Patvents’ beliefs No. of patients No. of pauents

Serious Yes I7 Yes 76 No 64 No 15

Needs Insulin Yes I7 Yes 91 No 64 No 0

Incurable Yes 3x Yes 91 No 53 No 0

Explanation on Yes 53 Believed 0 cause gven NO 3x Dlrbeheved 53

Diabetes mellitus 1331

inject insulin. When told by the physician that they had diabetes and yet were not needing insulin, the 64 non-insulin dependent patients found it diffi- cult to incorporate the diagnostic label into their understanding of what was involved in having the condition.

Cure. As in the case of insulin requirement, all patients believed diabetes to be incurable. This belief was confirmed by the physician in the case of the 38 patients who were not overweight. But the 53 patients 10% over ideal body weight were exposed to infor- mation which was inconsistent with their previous understanding. At diagnosis the physician empha- sized that the disease would be cured if excess weight were lost.

Cuusarion. Connected with the issue of cure was causation. Overweight patients were told un- equivocally that obesity had caused the condition. They did not believe the physician. No causal expla- nation was offered to the other 38 patients. Whatever their weight and diabetes type. patients were still searching for explanations even a year following diagnosis. Sixty were aware that diabetes ‘runs in families’ but were unclear how such a pattern of inheritance operated. They were concerned about the risk to their children and grandchildren of inheriting the disease. Twenty-nine patients attributed their condition to various forms of stress which varied from family bereavement to life-long hardship and struggle. In a moral sense, I4 patients wondered what they had done wrong to be so afflicted.

Uncertaint? about management and outcome

During the initial audio-taped consultations there was evidence that 41% of patients did not understand the information being given to them. This evidence is based on very obvious confusions or where patients articulated their lack of understanding. The idea of ‘portions’ (carbohydrate exchanges) was difficult for patients to grasp. Likewise, confusion about oral medication was demonstrable.

At second interview, patients spoke about difficulties experienced with practical aspects of man- agement and uncertainty about outcome. Results are summarized in Table 3. Patients described how they had learned to test urine for glucose by a process of trial and error. When questioned more closely on the subject. it was clear in the case of 25 (27.5%) that they had no idea why the tests were required. Forty of the 66 patients on oral hypoglycaemic medication percci\cd a need for more information. They were unsure about when to take the tablets and were worried about the interaction of diabetes medication with that hcing taken for other conditions. Diet was ;I problem and 04.5”~ of the sample expressed the

Table 4. Knowledge test scores one year followmg diagnosis; maximum

possible score = 40; N = 90

Tess score NO. %

0 I 1.1 I-5 2 2.2 6-10 4 4.4

II-15 10 II.1 I &20 16 17.8 21-25 19 21.1 2&30 23 25.6 31-35 15 16.7 36-40 0 0.0

90 100.0

Mean = 22.50; SD = 7.65; range = O-34.

need for further information on this subject. Lacking it, 29 patients turned to other sources for advice such as leaflets obtained from other hospitals, and maga- zine articles. The information contained in such sources conflicted with that originally given by the hospital and added to patients’ confusion. A promi- nent subject for the generation of uncertainty con- cerned complications. Although the physician adopted a policy of not discussing the issue with patients, nevertheless the majority of patients were well aware of the potential hazards. Seventy-five (82.4%) patients required more information and reassurance about their own risks.

These subjective expressions of uncertainty find confirmation in the results of the knowledge test administered on the same occasion as the second interview. The distribution of scores is shown in Table 4. One patient was unable to complete the test. More than one-third of the remaining 90 patients achieved half marks or less. Responses to questions on dietary management in particular showed inade- quacy of understanding.

Eflects of uncertainty

Confused about the nature of the disease from which they suffered and lacking essential information about management, the majority of patients adopted a cautious approach to life on a diabetic regime. The view of the 79 patients who reacted in this manner can be summarized in the words of one of their number:

“I expect I am a little too careful but I am not sure what penalties there are for being reckless”.

Such caution was contraindicated by the physician who was heard at diagnosis to encourage patients to ‘lead a normal life’. However, 87 (95.6%) patients regarded the diabetic regime to be incompatible with normality and, in one way or another, 44 (48.4%) patients declared their lives to have been seriously and adversely affected by the diagnosis and sub- sequent necessity to manage the disease.

In practical aspects of living. the adoption of a cautious approach interfered with their usual pattern of social and leisure activities in the case of 20 (22.0%) patients. They ceased to engage in any activity outside the home and such self imposed restrictions gave rise to family discord.

Worry was prominent in the sample. On the occa- sion of the first interview. 51.5% declared themselves to be very worried: a year later the proportion had

CHRISTINE MASON 1332

,

10

Hospital records

t

11

1

lntervlews

2

Fig. I. Instances of emotional disturbance and clinically authenticated psychiatric illness identified at interview and

in hospital records.

risen to 74.7%. The passage of time and their own direct experience of living with diabetes, rather than lessening concern, seemed to exacerbate it. Worry was rooted in fear of complications which brought in its wake concern about disability, loss of employ- ment. financial stability and death.

Mental illness

Mental illness was a prominent feature amongst this group of patients as is indicated in Fig. I. Data derive from two sources: interviews and hospital records.

A year after diagnosis, I3 (14.3%) patients were showing symptoms of serious depression evidenced by their continuing ruminations on suicide, un- worthiness, guilt and hopelessness. Eleven of these patients were receiving help from psychiatrists; one of the two patients not in receipt of care killed himself.

Twenty-one (23. I %) clinically authenticated cases of psychiatric illness were identified in the hospital records. Seventeen patients, including those I I identified at interview, were diagnosed as suffering from depression, 3 from anxiety neurosis, 1 a severe personality disorder.

Communication

Table 5 shows the average length of interactions between patients and the two health team members at the time of diagnosis. Also shown in this table are the average number of new units of information given

by professionals, the proportion of patient inputs (questions, answers. spontaneously proffered infor- mation) to interactions and the proportion of inputs by the physician and dietitian which were devoted to asking questions of patients.

Both physician and dietitian consultations were much preoccupied with information provision. In the case of meetings between the physician and patients. the input of the former was predominant. In some cases, apart from various murmurs of assent. patients made no contribution. The proportion of the physi- cian’s consultations devoted to questions asked of patients averaged 3.9%. In examining their content, it was found that only very rarely did they involve inquiry into patients’ understanding of the informa- tion being conveyed and never their feelings about or reactions to it. Patients’ contributions to meetings with the physician averaged 12. I % and these fell into the categories of answers to questions or occasionally spontaneously volunteered information. Questions which patients themselves attempted to ask failed to be answered. Various techniques of evasion, changing the subject, ignoring the question. cutting patients off in mid-sentence were used. The following example is typical. The patient repeatedly attempted to seek resolution of her worry about the interaction between thyroid and diabetic medication. At the end of the interaction, she tries once more.

Patient: “But does it matter, taking the two to- gether?”

Physician: “We’ll see you in 6 weeks and you’ll see the dietitian in a minute”.

Patients had more to say when they met with the dietitian although their contributions tended to be limited by her to straightforward answers to ques- tions about dietary preferences.

Examining the content of explanations given by both dietitian and physician, it was concluded that on a priori grounds, patients would have had difficulty in understanding information unless they had extensive prior knowledge of the complex metabolic processes underlying diabetes. Nothing was explained from first principles. For example, patients were told to test their urine at home; no information was given about why such a procedure was deemed necessary.

The physician only mentioned the word insulin when patients were judged to be in need of it. However, the dietitian frequently alluded to insulin even when no injections were required. The following extract is taken from a meeting with a patient on oral hypoglycaemic medication. He had asked no ques- tion which would have demanded the information being given

Dietitian:

More so than the physician. the dietitian used many technical words in her explanations to patients and her language style was formal. Technical usage of words interfered with communication when the words were not understood in the same manner by patients. The final tape extract shows the muddle which resulted. Here ‘energy’ is being used in its

to him.

“The tablets that Dr- suggested for you are not auite insulin in tablet form but they do help ;he body to produce a little bit mo;e of its own insulin in order to cope with the bare necessities as it were of your diet’..

Diabetes mcllitus 1337

technical sense by the dietitian. in the colloquial sense of feeling well and vigorous by the patient. Confusion again is exacerbated by unnecessary references to insulin.

Dietitian:

Patient:

Dietitian:

Patient:

Dietitian:

“This particular material. carbohydrate, in- stead of being turned from blood glucose into an energy. there isn’t the sufficient insulin in the blood to deal with the carbohydrate.. _‘*. “You say carbohydrate burns up glucose and uses it for energy. Well that is why I have no energy then-or not so much?” “Well carbohydrate is used as a form of energy. but body fat can be used as a source of energy too”. “But I am lacking in energy because of this then?” “You are lacking in energy mainly because you have too much carbohydrate and it can’t get out”.

Obviously the first meetings between patients and the clinic team were not the only ones to take place during the study year. There were return visits when patients met with the consultant and very occa- sionally with the dietitian. But it would appear that patients’ continuing confusion and queries failed to be answered even after a year. Only 7 patients identified no difficulty whatsoever in speaking with the physician; the remainder were diffident, express- ing it variously as being in awe of the physician or afraid he would consider their worries to. be trivial. Over one-third of the study group, although having very serious problems had discussed them with no- one.

DlSCUSSlON

Patients in this study were fearful. They were afraid that they would succumb to the long-term compli- cations and the physician’s silence reinforced their fear. There were fears about the risk of children and grandchildren inheriting the disease. Those on insulin were fearful of hypoglycaemia: a type of fear de- scribed by Macintyre and Oldham [3] which is ever- present and activity limiting. They feared premature death.

What is gained by the imposition of a diagnostic label is the beginning of treatment and relief of distressing symptoms. But such relief is attained at a price: the necessity to structure a new identity, in this case that of ‘diabetic’. The use of the adjectival form of diabetes was used by both physician and dietitian. There is a universe of difference between the state- ments ‘you have diabetes’ and ‘you are a diabetic’. The former retains the wholeness of the person; someone who has many attributes, one being that he or she suffers a disease. In the latter, being a sufferer from diabetes becomes the master status, encompass- ing all that the person is, has been and will be. Information provided in medical encounters becomes of central importance both for one’s self-definition and how one copes with a disease. In their search for a new identity and a way of coping, patients in this study were surrounded by uncertainties.

From the 1930s there has been a growing literature on psychiatric morbidity in patients suffering from diabetes which has been summarized in a review article by Dunn and Turtle [IO]. These reviewers have pointed to the serious methodological errors in re- search which has been seen as lending support to a hypothesized ‘diabetic personality’. In this study. nearly one-quarter of the patients were in receipt of psychiatric care; two others not receiving care were observed at interview to be seriously depressed and one of these committed suicide. Although hospital records gave clear indication when help was being given, it was not possible, despite careful review, to elucidate the date of onset of either symptoms or treatment. Lacking such information and not wishing to raise the thorny question of the legitimacy of psychiatric labels, the most that can be said is that for a quarter of the study group, diabetes and psychiatric illness coexisted during the period of follow-up.

For the physician. diabetic was an appropriate However, it is possible to be more confident in diagnostic label to confer on any person displaying concluding from the evidence of the whole study that glycaemia above a range which he defined as normal. the majority of patients were distressed. Further, it is For patients. their concept of diabetes was limited to suggested that the uncertainties encountered by a condition which was serious. incurable, required patients exacerbated their distress. Human beings insulin and was not caused by over-indulgence in have a deep need to make sense of their world. But food. From the outset. patients struggled with these uncertainty and ambiguity haunted and impinged on discrepant disease concepts. And their uncertainty every aspect of patients’ lives: on identity and per- was increased by the physician’s exhortation to ‘lead sonal worth, on status and role. on relationship with a normal life’. Such an injunction was not unique to family and friends, on their search for information this particular doctor: it is manifest in various ways and on their communication with professionals.

as an all pervading aspect of instruction on manage- ment [9]. But what is the yardstick of normality? The majority of the population do not require to test their own urine for sugar, to give themselves daily injec- tions. to control strictly diet. to bc scrupulous in the care of their feet, and arc not exposed to the evcr- present fear of blindness, amputation and prcmaturc death.

These were not the only sources of patients’ unccr- tainties. The word control is the ‘Icit-motif’ 01 diabetes. It is a condition where patients arc asked to be almost entirely responsible for a demanding pro- gramme of disease management requiring knowledge and skills. But patients in this study were unsure about these vitally important practical aspects of management. They were also uncertain about the degree of responsibility being delegated to them in practice rather than theory. The communication style of both physician and dietitian was ‘doctor-centered’ [8], a style which is considered inappropriate where so much of the responsibility is to be with the one who during consultation is required to be passive.

This doctor-centered style of communication was such that it discouraged patients from seeking an- swers to their continuing queries and resolution of their uncertainties. And these uncertainties had a profound impact on patients.

I334 CHRISTINE MASON

A~knolc,l~dgenlenrs-Thanks are due to Professor Charles du V. Florey, Mr Mark Reilly. Mr Neil Drummond and anonymous reviewers for their comments on earlier drafts 4. of this paper. to Mrs Helen McHardy for typing it and to the staff and patients who were involved in the study. 5.

6.

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