Patient involvement in decision-making in surgical and orthopaedic practice: The project perioperative risk

SOC.Sci.Med.vol. 28. NO. a, pp. 829-835.

1989

Printed in Great Britain. All rights reserved

Copyright

0277-9536/89 53.00 + 0.00 % 1989 Pergamon Press plc

PATIENT INVOLVEMENT IN DECISION-MAKING SURGICAL AND ORTHOPAEDIC PRACTICE: THE PROJECT PERIOPERATIVE RISK

IN

ULLABETH W-TERLUND LARSSON,I***KURT SV~RDSUDD,’ HANS WEDEL’ and ROGER SXud’ ‘Department of Medicine, Gothenburg University, Section of Preventive Medicine, Gstra Hospital, Gothenburg, Sweden, *Department of Communication Studies, Linkiiping University, Linkiiping, Sweden and ‘The Nordic School of Public Health, Gothenburg, Sweden Abstract-As part of the Project Perioperative Risk (PROPER), which is a clinical and epidemiological study of surgical complications, patient involvement in the decision to operate was evaluated by means of a questionnaire. The sample of 666 patients, on the waiting list for an operation, received a questionnaire on a broad range of issues concerning their involvement in the decision-making process one week before the operation. The results show that 41% regarded the decision to have an operation as a joint patient-doctor decision, in 29% of the cases the doctor advocated an operation and in 8% the patient asked to be operated. A clear majority, 73% felt involved in the decision-making as much as they wished. Two groups-women and immigrants from non-European countries-were least satisfied with their involvement and they also found the decision more difficult to make. In the discussion, it is argued that the comparatively high degree of patient satisfaction with involvement in the decision-making process cannot be taken as evidence of a high level of influence in an absolute sense. In a normative perspectiveand considering the fact that the increased responsibility of the health sector is aimed at involving patients in decision-making in health matters-patient satisfaction can just as well be understood as resulting from low expectations with respect to one’s own influence. The results also indicate that patient’s‘information needs when facing surgery relate to three issues; possible complications, precise nature of the operation as such, and nature and consequences of anaesthetic procedures. Key no&-patient involvement, patient participation, decision-making process, surgery, epidemiology, patient satisfaction, patient-doctor communication

INTRODUCTION

The most recent version of the Swedish Health and Medical Services Act [ 1, p. I] stipulates that “medical

care and treatment should as far as possible be offered and performed in co-operation with the patient” (our translation). General and non-committal as this statement might seem, it nevertheless signals an attempt at a decisive modification of the dominant tradition of distribution of roles and priorities in decision-making in health and medical care. The stress on the active participation of patients in medical encounters implies not only that there is an increased emphasis on providing relevant and comprehensive information, but also that to some extent responsibilities concerning treatment are redirected from the care-giver to the patient or, alternatively expressed, from the expert to the person whose health is at stake. The background for attempting to replace the traditional medical decision-making model-sometimes labelled the paternalistic one [2ewith a model focussing on active involvement on the part of patients is, of course, a change in dominant health problems in modem, industrial societies, as well as in our conceptions of causes underlying contemporary health problems. Many of the factors pointed to as *Address correspondence to: Ullabeth Siitterlund Larsson, Department of Medicine, Section of Preventive Medicine, t)stra Hospital, S-4i6 85 Gothenburg, Sweden.

determinants of poor health in the population are no longer of a clearly delimited biomedical nature, but concern matters such as life-styles with respect to smoking, drinking, eating, drug use, etc.; environmental factors such as stress, pollution, etc. To deal successfully with present and future responsibilities, the health sector thus has to work within a broader framework of potential cause-and-effect relationships than that characterizing the traditional task of curing illness [cf. 3-51. Active participation on the part of patients in matters concerning their own health is, of course, vital for curing illness as well, but it is even more important for the historically more recent task; that of preventing poor health. A prerequisite for patients, assuming an increased responsibility for their own health, is that they are provided with information which makes it possible for them to consider and discuss the nature and background of their health problem and the range of treatment alternatives available. To enhance our knowledge of the extent to which patients consider themselves involved in medical decision-making, the purpose of the present study was to focus on one type of situation where the decision-making is relatively clear with respect to its form and outcome. The aim of the study was to evaluate the patients’ perspective of their involvement in operation decisions, their desire to be involved, their conviction of the correctness of the decision and the perceived difficulty in making the decision. General and orthopaedic surgery are areas that are suitable for the study of patients’ involvement in 829

ULLABETHS~~RLUND LARSSOS~~a[.

830

decisions regarding their care. There are several reasons for this. The area is well-defined, the decision to have an operation is, for most people, a dramatic one which focusses attention on the decision situation, and the compliance with the decision outcome (i.e. operation or no operation) is easier to follow than compliance with medical treatment in other areas. Patient-doctor interaction and decision-making

A considerable amount of research on medical consultations has been published, describing various features of this genre of human communication such as the use of professional language [6-91, asymmetries in communicative roles, initiative and responsibility [lO-161, compliance [17-191 and so on. In addition, there are a number of studies on patients’ as well as doctors’ perspectives of the medical consultations, or only patients’ views or only doctors’ views [20-251. Few reports on patient’s views of their involvement in decision-making in surgery have been published. Cartwright [22] and Cartwright and Anderson [26] have touched on the subject. They studied the relationships and communication between patients and general practitioners, and also hospital staff, on two occasions, in 1964 and 1977. They found a small change indicating that the patients were more active in their communication with their doctor in 1977 than in 1964. In another study by Harris et al. [15], which reported the views of physicians’ and the general public on informed consent and decision-making, light is also shed on the subject of involvement and responsibility in the medical treatment decision. Harris et al. [15] reported that 75% of the physicians considered that it was their responsibility to persuade a patient to accept a medically indicated recommendation. At the same time, the study confirms that the general public’s perception was that “their doctors are responsive to their treatment preferences, particularly in extreme circumstances” [15, p. 231. As far as we know, the present study is the first one to focus directly on patients’ involvement in the decisionmaking process. THE E.MPIRICAL

STCDY

The vast majority of patients admitted for general and orthopaedic surgery in Scandinavia, are referred to hospitals with specialists by general practitioners. General practice is therefore almost always the level where the decision process involving the operation is initiated. The operation decision consequently involves not only the patient and the operating surgeon, but also a large number of doctors and other health care professionals outside the surgical sphere. This study constitutes part of the Project Perioperative Risk (PROPER), which is an extensive clinical and epidemiological study .of complications associated with surgical and orthopaedic operations and their risk factors. Sampling

The City of Gothenburg is served by two large university hospitals, located in the western and eastern parts of the city. Both hospitals provide medical and surgical care to a defined population in a specified geographical area.

The study was performed at one of these hospitals, the dstra Hospital. To be included in the study, patients had to meet the following criteria: l

l

l

l

they had to be adults living within the borders of the City of Gothenburg and admitted to the Surgical or Orthopaedic Departments of C)stra Hospital for elective surgery, they had to be notified about the date of operation at least one week before the day of surgery (to allow for a standardized preoperative investigation), they had to be subjected to an invasive operative procedure where an incision was made, and, finally, they had to be hospitalized postoperatively for at least 24 h to allow for a standardized postoperative follow-up.

The criteria for inclusion were fulfilled by 756 patients, out of whom 666 (88.1%) agreed to participate in the project. Due to the short time available before operation, it was not possible to reinvite those who did not respond to the first invitation. Methods

All patients accepted for surgery at the two departments were put on waiting lists. Patients were generally notified one to two weeks in advance of the day they were to come to the ward for the operation, except in rare instances when patients were called on shorter notice. When the patients were notified of the scheduled date of operation, a copy of the note was sent to the study headquarters. All patients who fulfilled the criteria for inclusion in the project were invited to a preoperative examination at a preoperative outpatient clinic, especially arranged for this project. Enclosed with the letter of invitation, which briefly explained the purpose of the project, were four questionnaires. One of these questionnaires concerned the decision process with respect to the forthcoming surgery. The other three questionnaires related to other substudies of the project and dealt with medical history, various aspects of their life-style and sleeping habits. The patients were asked to fill in these questionnaires at home and bring them to the preoperative clinic. At the clinic, the questionnaires were checked by a nurse and, if incomplete, were completed in co-operation with the patient. After this procedure, a standardized medical examination was performed. The questionnaire on how the decision to have the operation was arrived at covered the following areas: the disease for which the operation was to be performed, the venues into medical care due to this disease, the patient’s view of his or her role in the operation decision process, the discussion of possible alternative treatment and whether, according to the patient, enough time was provided for the decision process. This report focusses on the questions relating directly to the decision process. Information on occupation, education and country of birth was obtained by means of a questionnaire. A social class grading was performed, based on occupation according to a Swedish modification of the British social class scale [27]. For this report, a five-point scale was used, ranging from executives

Patient involvement and academic professions (= 1) to unskilled workers (= 5). Education was classified as: primary school (= I), comprehensive school (= 2), secondary school (= 3), upper secondary school (= 4), and university (=5). Country of birth was classified as: Sweden (= l), other Scandinavian countries (= 2), European countries outside Scandinavia (= 3) and countries outside Europe ( = 4). The anticipated perioperafiue risk, i.e. the risk of suffering a complication regardless of its nature during or after the operative procedure, was estimated by the examining physician, who used all available preoperative information. The risk was indicated on a visual analogue scale (VAS) of a Likert-type ranging from the lowest possible risk (=0) to the highest possible (= IO)! To make it possible to analyse the significance of the seriousness of the disease/condition for the patient’s views on the decision-making process, the patients were grouped by the investigators into those who had a malignant disease (ICD 8 codes 140-210) and those who did not have such a diagnosis (all other codes) [28]. For a similar analysis of the influence of the upcoming surgery on attitudes towards the decisionmaking process. three types of operations were distinguished. Surgery for varices and inguinal hernias was labelled minor surgery, surgery for knee-joint disorders and prostate hypertrophy (transurethral resections) intermediate surgery, and cholecystectomies and osteosynthesis of collum femoris were labelled major surgery. Statistical

analysis

In order to make the statistical analysis more efficient, all the variables were coded in such a way that they might be regarded as arranged in an ordinal form. In this way, trend tests could be used which are more efficient than tests used for nominal data, and which would reduce the problem of mass significance that might otherwise turn up. The trend tests used in this study were Pitman’s non-parametric permutation test [29] and Pearson’s correlation coefficients. In both these tests, only relationships forming a trend were taken into consideration to reduce the chance of accepting spurious relationships. All tests were twotailed. P-values equal to or less than 0.05 were generally regarded as statistically significant. Multivariate methods were used to take obvious confounding factors into account. For the multivariate analyses, Pitman’s non-parametric permutation test was used in its multivariate form. The advantage of this test is that no assumptions about the functional forms of the relationships have to be made. To check the results, some of the analyses were repeated with the multiple linear regression technique. The results using these two tests were the same.

831

Fifteen patients (2.4%) were classified as social class 1, 40 (6.5%) as class 2, 202 (32.9%) as class 3, 260 (42.3%) as class 4, and 52 (8.5%) as class 5. In addition, 45 (7.3%) were difficult to classify. This group included students, housewives, and others with an uncertain occupational status. Three hundred and five patients (47.4%) had 6-8 years’ compulsory education in the earlier elementary school system (folkskola), 57 (8.9%) had attended comprehensive school, 131 (20.3%) has a secondary school education (realskola), 99 (15.4%) had an upper secondary school education (high school, junior college), and 52 (8.1%) patients had a university education. Five hundred and fifty-one patients (85.2%) were born in Sweden, 46 (7.1%) in other Scandinavian countries (including Finland), 40 (6.2%) in European countries outside Scandinavia, and 10 (1.5%) were born in countries outside Europe. The distribution of estimated perioperative risk is shown in Fig. 1. Most patients had a low estimated risk. The patients’, view of their infuence operation decision

on who made the

The patients were asked to indicate who, in their judgement, made the decision and their own influence on the decision to operate by first checking one or more of the following alternatives: joint decision patient-doctor, the doctor advocated the operation, the patient wanted the operation, and others wanted the patient to have an operation. In this latter one, the patients were asked to indicate who the others were. The results are shown in Fig. 2. The three most common response alternatives were: joint decision (41.2%), doctor advocated (28.9%) and patient wanted operation (7.9%). The combination of ‘joint decision’ and ‘patient wanted operation’ was selected by 4.9%. The corresponding combination of ‘joint decision’ and ‘doctor advocated operation’ was selected by 4.7%. Other combinations were rare. Immigrants from other Scandinavian and European countries had a response pattern similar to those born in Sweden. Immigrants from nonEuropean countries tended to be less inclined to describe the decision as a joint one between patient and doctor and more inclined to consider the decision a result of the doctor advocating surgery (P = 0.06).

‘“3 30-

RESULTS

Patient characteristics

The age distribution of the study population was similar for females and males. The youngest person was IS years and the oldest was 94 years old. The average age was 56.6 years.

1

2

3

4

5

PERIOPERATIVE

Fig. I. Distribution

6

7

RISK

of estimated

8

9

10

SCORE

perioperative

risk.

832

ULLABETH

-JCM

PATIENT-DOCTOA

EasK)N

PATIENT

SiTIFRLUND

WANTED’

LARSON

Table

I.

et a!.

Patients’

evaluation

!/

of their

making

,/

involvement

in the decision-

process n

41.2%

4%’

‘1.9%

DOCTOR ADVOCATED /

r 4.?%

hlrn

3.6%

28.9%

D.3%

0.9%

0.2%

D%

0.3%

0.2% \J

0.2%

0.3%

Patient

wanted

Patient

involved

Patient

wanted

No

r

to be less involved as much to be more

L

12.6

involved

71

Il.2

99

15.7

632

100.0

J

L

indicated that they wanted to be more involved in the decision (P < 0.02).

/ THEM

NO OPINION

PUSHED

3.3%

Perceived dtjiculty of decision

Fig. 2. Distribution of various combinations of influence on the operation decision.

The patients’ perception of how they perceived their involvement in the decision-making process was shown by indicating one of the alternatives, presented in Table 1. In 73% of the cases, the patients stated that they felt involved in the decision-making to the extent they desired. Approximately 11% of the patients wanted to be more involved in making the decision, 15.7% expressed no opinion and only three (0.5%) patients stated that they wanted to be less involved. However, a large proportion (48%) of the patients who reported that they wanted to be more involved in the decision-making process felt that the decision was a joint one. Among those who felt sufficiently involved, 61% reported that the decision was a joint one. Of those who indicated that the doctor had advocated the operation, 34% wanted to be more involved and 26% felt sufficiently involved (see Table 2). The response patterns differed somewhat between sexes. Around 77% of the men reported that they had been involved as much as they desired, while the corresponding percentage for women was 68%. About 14% of the women wanted to be more involved in the decision-making process, while the corresponding figure for the men was 9%. The patients expressing a wish to be less involved in the decision were all men. As a general pattern, women were more inclined to express the opinion that they wanted to be more involved, while the men appeared to be more satisfied with the present situation (P = 0.02). Immigrants, and particularly the immigrants from non-European countries, showed a response pattern different to the one shown by the patients from Scandinavian and European countries, and they Table

2. Patients’

desire

of involvement decision.

‘Only’

The patients were asked to indicate how difficult or easy the decision to have an operation was on a seven-point visual analogue scale (VAS) of a Likerttype, ranging from ‘difficult to make the decision’ (I) to ‘easy to make the decision’ (7). Half of the patients, 50.2%, indicated that the decision was easy to make, score 7. The other responses were fairly evenly distributed over the rest of the scale. The response pattern was similar for men and women. Both sexes clearly favoured the alternative ‘easy to make the decision’. However, the women had a significantly lower score (female 4.8, male 5.5, P c O.OOOl),indicating that they found it somewhat more difficult to make the decision. Immigrants, European as well as non-European, perceived the decision-making as more difficult (means ranging from 4.5 to 3.6) than patients from Scandinavian countries (means ranging from 5.2 to 5.3, P < 0.01). Conviction of rightness of decision

The patients were asked to indicate how convinced they felt that the decision to operate was the right one on a seven-point scale, as mentioned earlier of a Likert-type, ranging from ‘not convinced’ (= 1) to ‘fully convinced’ (=7). In more than half of the cases, the patients reported being fully convinced (Fig. 3). The other responses were fairly evenly distributed over the rest of the scale. The response pattern was similar for women and men. However, the female group had a slightly lower mean score (5.6) than the male group (6.1), indicating were somewhat less convinced that women (P < 0.005).

Immigrants from non-European countries were less convinced (mean 4.6) than those from Scandinavia and other European countries (means ranging from 5.6 to 5.9, P < 0.02).

in the decision-making indicates

that

process and their

this was the only

Wanted

Joint

was the decision

by patient

and doctor

(all combinations) Doctor advocated operation Patient

wanted alternatives

on the operation

Wanted Sufficiently

to

be less

involved

involved

to operate

at? decision

influence

checked

to

involved How arrived

perceived

alternative

be more

Total

0.5

459

opinion

Total

7

Other

as he or she wanted

% 3

opcration

(only)

(only)

n

%

”

%

n

%

34

47.9

280

61.0

2

66.7

24

33.8

II9

25.9

I

33.3

6

8.5

36

7.8

0

0

7

9.8

24

5.3

0

71

IO0

459

100

3

0 IM)

Patient

involvement

833

Table 4. Reasons for being convinced that the operation decision war the right one. More than one alternative could k checked Reasons Operation only realistic alternative Operation risk small compared to risks associated with disease Miscellaneous

60’

n

%

301

54.2

223 64

40.2 11.6

40-

20-

1

2

3

4

5

UNCONVINCED

Fig.

6

7 CONVINCED

3. Distribution of the patients’ conviction that decision on operation was the right one.

the

Reasons for being convinced or unconvinced

Those patients who indicated that they were not convinced that the decision to operate was the right one (l-3 on the VAS scale; Fig. 3) were asked to indicate their reasons for not being convinced. The most common reasons given were fear of complications, worry about the operation procedure, and worry about the anaesthetic procedures (Table 3). Table 4 shows the reasons for being convinced that an operation was the most suitable treatment (values 4 or higher on the VAS scale, see Fig. 3). The most common reasons given were that the operation was perceived as the only realistic alternative and that the risks of having an operation were small compared to the risks associated with the disease. The reasons given for being convinced were not related to country of birth or estimated risk. However, patients born in Sweden reported more worries about complications than other patients (P < 0.01). In addition, the higher the estimated perioperative risk, the less the fear of anaesthetic procedures (P < 0.01) and the less the fear of operation (P < 0.04) among those not entirely convinced about the decision to have an operation. Seriousness procedure

of

medical

condition

and

operative

To see whether patients with serious diseases took a different view of the decision process than other patients, the sample was divided by the investigators into two sub-groups; patients with cancer and patients with other diagnoses. The cancer patients regarded the operation decision as more difficult than other patients. In all other respects, these two groups has a similar response pattern. Table 3. Reasons for not being convinced that the operation decision was the right one (n = 70). The alternatives were not mutually exclusive. i.e. more than one alternative could be checked

Reasons

n

%

Fear Fear Fear Too

44 20

62.9 28.6

of complications of operation

of anaesthesia short discussion of alternatives Too large operation risk in relation to risks associated with disorder Miscellaneous

19 II

27. I 15.7

IO 10

14.3 14.3

To see whether the magnitude of the operative procedure had affected the views of the patients, the study population was classified by the investigators into three groups: patients facing minor, intermediate or major surgery. Patients undergoing major surgery regarded the decision as more difficult than those having an intermediate operation who, in turn, regarded the decision as more difficult to make than patients undergoing minor procedures (P < 0.0001). Patients with major surgery were also less convinced about the correctness of the decision than other patients (P < 0.05). However, in all other respects the views expressed on the decision were similar. DISCUSSION

By and large, the patients seemed fairly satisfied with their involvement in the decision-making process. This was unexpected, since the general impression, put forward not only in the mass media but also in the scientific literature [30], is one of dissatisfied patients. However, an interesting-and intriguing-issue is what our results mean in a wider context. In an absolute sense, is it reasonable to state the patients have a decisive say in decision-making in orthopaedic and surgical care? Judging from the results presented by, for instance, Cicourel [31], Mishler [32], Frankel (331 and Silverman [34], one would be rather hesitant in drawing such a generalized conclusion. Our interpretation of the present findings is that the patients’ satisfaction reflects a balanced situation in the sense that the patients have the influence they expect and consider natural. In other words, our results reflect the opinions of a population brought up with certain-and probably rather narrow-expectations regarding their own role and responsibility when taking this type of decision. The encounter between patient and doctor takes place in a standard form with clear rules for appropriate roles and responsibilities for participants. As Bochner [35, p. 1371puts it, the medical consultation “like any stylized social encounter, has a set of rules and assumptions, a culture”. We suggest that our results follow and simultaneously confirm this pattern of culturally and socially endorsed expectations. Reports of patient satisfaction should be read not as a direct measure of patient influence in the care process, but rather a measure of cultural fit between patient and staff expectations. Some of the differences between groups found in the material can be read as supporting the general idea of a culture fit between dominant values among patients and staff. Two distinctive groups-women and immigrants, especially those from non-European countries-reported being less satisfied with the decision-making process and their influence. For the

834

ULLABETHSXTTERLUNDLussoser al.

immigrants, the higher degree of dissatisfaction may be due to language difficulties and problems of communication, but may also result from cultural differences with respect to expectations about how health institutions should operate. This problem has been very clearly illustrated in, for instance, Sachs’ [36] studies of Turkish immigrant women’s encounters with western health care. She illustrates how immigrant women’s previous experiences of care and preconceptions regarding proper treatment of illnesses made it difficult to accept the methods of treatment suggested by Swedish doctors. Sachs [36, p. 2191 pointed out that the “chief reason for this is that the effectiveness of unfamiliar methods is something that has to be experienced. When this has been done, the new methods can be integrated in the common stock of knowledge” and begin to be understood within the framework of standardized western health care [cf. 351. For the women in our study, the findings may be interpreted as indicators of a decision-making tradition in surgery that to some extent is less sensitive to information needs experienced by women. The greater demand for involvement and information expressed by the women-although the differences are small-may signal that what Gilligan [37] refers to as ‘female values’, with respect to rationality and decision-making, plays a role in the health care system as well. For immediate clinical practice, the findings concerning the reasons patients give for being hesitant as to whether the decision to operate was the right one (cf. Table 3) are interesting. There seem to be particularly three factors that give rise to this hesitancy about the upcoming surgery; fear of complications, uncertainty about the precise nature and extent of the operation as such, and the nature and consequences of the anaesthetic procedures. It seems important that these areas be brought up as an explicit topic of discussion in the medical encounter. Patients should thus be granted the opportunity-perhaps even explicitly encouraged by the physician-to obtain information concerning possible complications, the technicalities of the operation and the anaesthetic procedures. At the same time, it seems necessary to question somewhat the conventional assumptions concerning the phrasing of information to patients. Attempts at informing patients should, in our view, be perceived as a mutual project with joint responsibilities between interlocutors instead of the traditional one-way communication from expert to patient [cf. 38, 391. Although the patients in this study were provided with the standard and rather extensive information before surgery, a substantial proportion of them did not seem to have been given information perceived as relevant to their questions about complications, the nature of upcoming surgery and/or anaesthetic procedures. An argument could be made that what is lacking has more to do with the quality of information and communication in the surgical setting than with the provision of factual detail. To improve patient knowledge-and participation in health decisions-an additional step of actively encouraging people to ask questions they perceive to be relevant should be taken. In other words-if our results on patient satisfaction can be interpreted as indicating low expectations with respect to patient

activity in health care settings-it is the task of care-givers to actively elicit questions from patients and to discuss issues brought up. This attitude towards ensuring patient participation would, in our view, be preferable to a mere increase in the standardized and depersonalized information given to patients. Acknowledgements-This study was supported by grants from The Swedish Ministry of Health and Social Affairs, The Commission for Social Research (project No. F 84/3010:3, F 85/154:2), the City of Gothenburg and the Gothenburg University. The authors would like to thank two anonymous reviewers for helpful comments on an earlier draft of this article.

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