Patients’ preferences for participation in clinical decision making: a review of published surveys

Patients’ preferences for participation in clinical decision making: a review of published surveys

Jochanan Benbassat

Models of doctor-patient relations vary between “paternalistic” and “informative.” The paternalistic model emphasizes doctors’ authority; alternative models allow patients to exercise their rights to autonomy. Published surveys indicate that most patients want to be informed about their diseases, that a proportion of patients want to participate in planning management of their illnesses, and that some patients would rather be completely passive and would avoid any information. The severity of the patients’ conditions, and their being older, less well educated, and male are predictors of a preference for the passive role in the doctor-patient relationship, but demographic and situational characteristics explain only 20% or less of the variability in preferences. The only way a physician can gain insight into an individual patient’s desire to participate in decision making is through direct enquiry. The ability to communicate health-related information and to determine the patients’ desire to participate in medical decisions should be viewed as a basic clinical skill.

Index Terms: communication skills, doctor-patient relations, patients’ preferences

Doctor-patient relations may be viewed as a continuum between the extremes of the paternalistic model (doctor decides, patient complies without any explanations) and the informative model (doctor provides information, patient decides). This continuum consists of varying degrees of shared decisions (doctor provides information and advice, patient participates in decisions by expressing his or her preferences among alternative treatments).[1,2] The paternalistic model emphasizes doctors’, authority and autonomy and assumes that doctors share their patients’ values.[2] The remaining models assume that physicians and patients may differ on the value of clinical actions.[3]

During recent decades, recognition of patients’ rights to be informed about and participate in decisions about medical care has increased.[4] Respect for patients’ autonomy has been included in the medical code of ethics,[5] and many countries, including the United States[6,7] and Israel,[8] have passed legislation to protect patients’ autonomy and provide for informed consent to medical interventions. Still, there is considerable variability in participatory decision-making styles of practice among individual physicians in the United States.[9] In Israel, the legislation for protection of patients’ autonomy has been viewed by some physicians as an encroachment on their independence, and physicians have been quoted in the news media[10] as claiming that patients do not really want to be informed and do not expect to be involved in clinical decisions.

Clinical decisions can be viewed as a negotiated compromise among patient’s and physician’s autonomy and values.[11] More recently, this contract has been expanded to consider institutional or societal values of equity in the use of resources. Ideally, agreement among these three parties should be complete. However, an undetected disagreement may affect doctor-patient relations and clinical outcomes. Patients’ preferences and expectations are important because they affect patients’ relations with their physicians.

In this article, we review available surveys of patients’ preferences and try to gain an insight into the conceptual and methodological problems that may explain the variability in published data. We attempt to look more closely at the studied populations and evaluation instruments and determine whether patients’ preferences can be predicted by demographic and situational variables.

METHOD

We sought out all published surveys of patients’ preferences regarding the model of doctor-patient relations through MEDLINE (key terms: patient preferences, autonomy, decision making, consumer participation, questionnaires), through the reference sections of the identified articles, and through the citation index. We excluded studies dealing with methods of sharing information with patients, patients’ preferences for specific modes of treatment, factors affecting patients’ participation in clinical trials, living wills (do not resuscitate orders), general discussions of the nature of informed consent, or comparative studies of the outcomes of participatory and nonparticipatory practice styles.

The remaining articles[3,12-29] were reviewed with reference to their methods and findings. We focused on the studied populations, on the reliability and validity of the evaluation instruments, and on the analyses (bivariate and multivariate) of the relationship between the independent variables (sociodemographic and situational) and the dependent variables (patients’ preferred level of participation in decisions regarding their management).

RESULTS

Methods of Investigation, Reliability, and Validity

Surveys of patients’ preferred roles in decision making have varied in study populations and survey instruments. Study populations have consisted of nonpatients,[3,12-14,24,25] cancer patients,[14,17-23] and patients with nonmalignant chronic diseases.[15,16,26,27] Two types of instruments have been used to explore patient preferences. Some authors[12-23] used forced-choice (FC) instruments, offering alternative statements, such as “I prefer to leave decisions about my care to my doctor” or “I prefer to participate in decisions about my medical care,” and presented their results in terms of proportions of respondents preferring a given model of doctor-patient relations (Table 1). Other researchers[3,24-29] have used multiple-item questionnaires (MI instruments) and presented their results as average scores from 0 (preference for a passive role) to 100 (preference for an active role) (Table 2). Still other investigators have used structured interviews in order to define the patient’s concept of the “ideal” doctor.[23]

TABLE 1 Patients’ Preferences for Type of Doctor-Patient Relationships, Based on Responses to Forced-Choice Questionnaires

Patients’ preferred roles (%)

Group/

source N Active Collaborative

Nonpatients

Haug and Lavin[12] 636 20 65

Harris et al[13] 1,251 7 72

Degner and Sloan[14] 482 64 27

Noncancer patients

Strull et al[15] 210 3 19

Deber et al[16] 300 10([dagger]) 60([dagger])

Cancer patients

Cassileth et al[17] 256

Age 20-39 87

Age > 60 51

Blanchard et al[18] 439 69

Sutherland et al[19] 52 10 27

Degner and Sloan[14] 436 12 29

Davison et al[20] 57 7 35

Bilodeau and Degner[21] 74 20 37

Hack et al[22] 35 6 74

Baider et al[23]

Israeli 200 ng 81

Russian 200 ng 14

Patients’ preferred roles (%)

Group/ Avoid

source Passive information

Nonpatients

Haug and Lavin[12] 12 3

Harris et al[13] 12 7

Degner and Sloan[14] 9

Noncancer patients

Strull et al[15] 78 —

Deber et al[16] 30([dagger])

Cancer patients

Cassileth et al[17]

Age 20-39 13

Age > 60 49

Blanchard et al[18] 23 8

Sutherland et al[19] 63

Degner and Sloan[14] 59

Davison et al[20] 58

Bilodeau and Degner[21] 43

Hack et al[22] 14 6

Baider et al[23]

Israeli ng ng

Russian ng ng

Group/ Predictors of preference

source for passive roles

Nonpatients

Haug and Lavin[12] Older age, poor education

Harris et al[13]

Degner and Sloan[14]

Noncancer patients

Strull et al[15] Older age, male gender, poor

education, low income

Deber et al[16] Disease severity

Cancer patients

Cassileth et al[17]

Age 20-39 Poor education, old age

Age > 60

Blanchard et al[18] Older age, gender, bed-ridden state

Sutherland et al[19]

Degner and Sloan[14] Older age, disease severity, poor

education, male gender

Davison et al[20]

Bilodeau and Degner[21]

Hack et al[22] Poor education

Baider et al[23]

Israeli Cultural (Russian) background

Russian

Note. ng = not given.

([dagger]) Approximately from published table.

TABLE 2 Patients’ Preferences for Type of Doctor-Patient Relationships, Based on Various Scales

Score (%)

Group/ Desire for Desire for

source N information participation

in decisions

Nonpatients

Vertinsky et al[3] 200 66.00 16.0

Krantz et al[24] 200 57.9([dagger]) 42.1([dagger])

Ende et al[25] 151 74.5 40.60

Noncancer patients

Pendelton and 47 36.3([dagger]) 15.4([dagger])

House[26]

Ende et al[27] 312 79.5 33.2

Beisecker and 106 92.7([dagger]) 33.1([dagger])

Beisecker[28]

Deber et al[16] 300 81.4 ng

Thompson et al[29] 459 ng ng

Cancer patients

Sutherland et al[19] 52 53.0 21.1

Group/ Predictors of preference for

source passive roles

Nonpatients

Vertinsky et al[3] Older age, longer hospital stay,

frequent visits to physicians

Krantz et al[24] Higher number of clinic visits

Ende et al[25] Disease severity

Noncancer patients

Pendelton and

House[26]

Ende et al[27] Older age, poor education, disease

severity

Beisecker and Younger age, female gender

Beisecker[28]

Deber et al[16] Older age, disease severity

Thompson et al[29] Older age, poor education

Cancer patients

Sutherland et al[19]

Note. ng = not given.

([dagger]) Scores were translated into percentages from the original scale.

The reliability (Cronbach’s alpha) of the FC instrument has been reported as .87[29] and as varying between .67 and .93.[16] A general impression regarding the concurrent validity of FC instruments has been inferred from the agreement between those results and those of independently conducted patient interviews.[15] Two attempts to determine the predictive validity of the FC instrument produced contradictory results: Haug and Lavin[12] found that the instrument failed in predicting actual behavior, whereas Bilodeau and Degner[21] reported a 50% agreement between the subjects’ preferred roles according to the FC instrument and the roles the patients actually assumed in treatment decision making. The reliability of the MI instruments has been reported in terms of test-retest correlations of .59, .74,[24] and .84,[27] and Cronbach’s alpha levels of .75,[16]. 88,[19] and .82.[27] have been reported. Correlations among different types of MI instruments were .34[29] and .49.[19] Ende et al[27] validated their instrument by administering it to selected diabetic patients who were described by their caregivers as highly adept in self-care. The results confirmed the prediction that these patients would score significantly higher on the decisionmaking scale than the general patient population. Similarly, Krantz et al[24] confirmed their prediction that students enrolled in a self-help group would score higher on their desire to participate in medical decisions than the general student population. In four studies,[16,19,27,29] both FC and MI instruments were used, and the authors reported that the correlation between the two was .54[27] and .33.[29]

The patients’ preferred model of doctor-patient relations did not appear to be a single, homogeneous variable. Krantz et al described two components of patients’ preferences: “information seeking” and “attitudes to self-treatment and to active involvement in clinical decisions.”[24(p920)] Those components were also identified as discrete variables by other investigators.[27,28] We noted a significant trend in the published reports for increased information seeking along with increased levels of preference for participation in decision making.[19] Vertinsky et al[3] used factor analysis to detect six additional orthogonal dimensions, such as insistence on more thorough examination, search for a second opinion, and supplementation of physician orders by proprietary drugs. Finally, Deber et al[16] presented evidence that patients’ preferred level of participation in decision making differed from their wishes to participate in problem solving (diagnosis or identification of treatment options).

Patients’ Desires for Information and Preferred Roles in Clinical Decision Making

The variability among the MI instruments[3,24-29] and among their scoring methods precludes a valid synthesis of the results. In general, studies using these types of instruments have found higher scores for information seeking than for a desire to participate in medical decisions. The authors concluded that the average respondent would request information in case of illness, but would leave the responsibility for the medical decisions to his or her physician. In other words, most respondents did not want an active role, but neither did they want to be entirely passive in the doctor-patient relationship. This conclusion was supported by studies using FC instruments, which found that only 3% to 8% of the respondents preferred a completely passive roles and avoidance of any information.[12,13,18] The vast majority of studied patients wanted to be informed about their diseases, and varying proportions of the respondents expressed a wish to be involved in the decision-making process.

The proportions of those who preferred an active role (doctor provides information, patient decides) or a collaborative role (doctor provides information and advice, patient participates in decisions by expressing his or her preferences among alternative treatments) in the decision-making process and of those who prefer a passive role (ie, to receive information with a view of following the doctor’s advice) have varied among the different surveys. Surveys have indicated that as many as 80% of nonpatients would prefer active or collaborative involvement in decisions related to their disease management. Patient surveys using the same instrument have yielded less consistent results. Some found a preference for active or collaborative participation in clinical decision making among 69%,[18] 80%,[22] and 81%[23] of patients, whereas other researchers have found a preference for active or collaborative participation among only 22%,15] 37%,[19] and 41%[14] of those surveyed

Predictors of Patients’ Preferred Roles in Clinical Decision Making

A higher proportion of respondents who preferred a passive role in their relations with caregivers has been found among persons who are sicker, less educated, from minority ethnic groups, male, and elderly. Degner and Sloan[14] found that as many as 91% of their healthy respondents, but only 41% of their cancer patients, expressed a preference for active involvement in clinical decision making. Similarly, Krantz et al[24] reported a 57.9% score on desire for information and a 42.1% score on the desire for participation in decision making among healthy college students. Using the same instrument, Pendelton and House[26] found that the respective scores among older diabetics were 36.3% and 15.4% only. Finally, Ende et al[27] reported that the more serious the hypothetical disease situation they presented to their respondents, the less the patients wanted to be involved in decisions. The association between a tendency to prefer a passive role and disease severity or duration was confirmed also by others.[3,18]

Another determinant of patients’ preferences for participation in clinical decision making emerged from the comparison between veteran Israelis and Russian immigrants in an oncology ward.[23] Of the Israeli patients, 81% described the ideal physician as one who shared treatment decisions; among the Russian immigrants, only 14% expected the ideal physician to share decisions with the patients. Similarly, Koreans and Mexican Americans have been reported to be less likely than Europeans and African Americans to believe that patients should be told the prognosis in a terminal illness and be involved in end-of-life decisions.[30] This variability could be a result of cultural norms or of possible (unexplained) differences between the attitudes of immigrant populations and those of stationary populations.

A third determinant of patients’ preferences is age.[3,14,17,18,27,31] Cassileth et al[17] surveyed their cancer patients and found that as many as 87% of those aged 20 years to 39 years preferred a participatory relationship in decision making, but only 51% of those older than 60 years opted for such a relationship with their physicians. The age-related differences could be attributable to health state or to cultural norms: Older patients may expect the paternalistic type of doctor-patient relationship that was widespread in the 1950s. Other reported predictors of a preference for a passive role were male gender[3,14,18,31] and limited education.[14,22,31] The predictive value of poor education, older age, male gender, and severity of disease for a preferred passive role in the doctor-patient relationship is supported by reproducibility of the strength of these variables in studies conducted over a wide period of time (1974-1996), in different countries, and using different types of instruments with both patients and nonpatients.

Patient preferences apparently affect physicians’ behavior to some degree. Kaplan et al[32] reported that elderly patients (aged 75 years and older), patients with a high school education or less, minority patients, and male patients elicited from their physicians the least participatory practice style. Still, the relationship between these predictors and patient preferences is probabilistic, and only 15%,[14] 19%,[27] and 25%[29] of the variance in decision making has been reported to be accounted for by stepwise regression models in which sociodemographic and health status variables were used as predictors.

Patients’ Preferences and Satisfaction With Healthcare

The evidence that physicians’ participatory styles of practice are associated with higher patient satisfaction is undisputed.[33] However, analyses of patients’ satisfaction with their healthcare according to their preferred roles in decision making have not produced consistent results. Some authors reported that patients who preferred an active role were slightly but significantly less satisfied than those who wanted the physician to make the decisions.[18] Similarly, Beider et al[23] found that patients who expected less information and a lower degree of participation in the decision making were less disappointed by the physician’s actual behavior. On the other hand, Ende et al[27] reported that patients who were less interested in making decisions themselves were also less satisfied with their medical care.

DISCUSSION

The main findings from our survey of the literature are as follows: (a) the vast majority of respondents (92% or more), both patients and nonpatients, in Canada, the United States, and Israel declared they wanted to be informed about their illnesses; (b) there is a considerable variability among individual patients in their preferred degrees of participation in decision making; and (c) as much as about 80% of this variability remains unexplained. We believe that these findings justify the following recommendations for medical education and future research.

Research does not support the claim that “patients do not want to be informed.”[10] Patients want to know about risks and alternative therapies,[34] and this desire is at odds with the behavior of those physicians who provide little information, who disclose only risks with a relatively high probability of occurrence,[34,35] and who have a nonparticipatory style of practice.[9] Indeed, there is direct evidence that patients and physicians disagree on the importance of communication of health-related information,[36] that patients with Hodgkin’s disease do not share their doctors’ priorities in decision making,[37] and that the needs for information of patients with breast cancer[38] and bronchial asthma[39] appear to be underestimated by their doctors.

Physicians are poor predictors of patients’ preferences for intensive care treatment,[40-42] and the accuracy of their predictions does not improve with professional experience or duration of relationship with the patient[42] To the contrary, the belief in physician-only decision making increases with training and experience beyond medical school.[43]

These findings, as well as published evidence that patients who ask questions, elicit treatment options, and express their preferences have better health outcomes than those who do not,[9,44-46] suggest an acute need for a sustained indoctrination of the ethical and legal doctrine of respect for patients’ autonomy. Physicians’ practice styles can be affected by training.[9,43] Medical students should be taught to consider not only patients’ needs, as defined by the caregiver, but also patients’ preferences, as defined by the patients themselves.

The findings we reviewed indicate that, at present, it is impossible to predict individual patients’ preferences for participation in medical decision making. The only way a clinician can gain an insight into those preferences is through an explicit enquiry. To date, undergraduate programs of interviewing skills attempt to impart to medical students the tenets of the “patient-centered interview” and the ability to encourage patients to share with the interviewer their symptom matrix, personal background, and perspective.[47-48] However, techniques for eliciting patients’ needs for information and preferred degree of participation in clinical decision making are seldom discussed. Because some patients may not volunteer information regarding their preferred model of relationship with their doctor, students should be taught to ask questions that seek to clarify this specific aspect of the patient’s perspective.

What is this aspect, and how can it be explored? A significant finding of the studies in which multiple-item instruments were used was the multidimensionality of the variable patient preference for participation in medical decision making. This finding argues against the simple linearity of the continuum between the paternalistic and the informative extremes of doctor-patient relations. Patients’ attitudes toward doctor-patient relations appear to consist of multiple, discrete, orthogonal factors (Table 3) that include not only information seeking and involvement in clinical decisions,[20,23,24] but also a thorough examination (an insistence on more thorough examination); second opinions (a search for additional professional opinion); self-medication (supplementation of physician orders by proprietary drugs); avoidance (patient’s preference to delegate decisions to the physician); anxiety reduction; reading (patient’s propensity to use external written sources of information); and a general propensity to avoid conflict with their physicians.[3] There are also indications that the preferences of parents regarding their relations with their child’s physician may differ from those regarding relations with their own physicians.[49] In addition, there may also be differences in attitudes toward various sources of information, decision making, and self-care.[21]

TABLE 3 Possible Dimensions of Patients’ Needs for Information and Participation in Clinical Decision Making

Information seeking

Sources of information: personal (physician, nurse,

friend), written[3,21]

Type of information (stage of disease, likelihood of

cure, self-care, treatment options)[20,21]

Responsibility for problems solving (physician’s,

patient’s)[16]

Insistence on more thorough examination[3]

Search for an additional professional opinion[3]

Preferred use of specific terms (cancer, malignancy)[22]

Involvement in decision making

Self-medication (supplementation of physician orders

by proprietary drugs)[3]

Preference to delegate decisions to the physician[3]

Preference to avoid conflict with physician[3]

Participation in clinical decisions[16,20,23,24]

Differences in thoroughness of exploration of the various orthogonal variables may partially explain the variability in the results of the studies we reviewed. Another possible explanation is that “expectations” or “preferences” may be related to a hope for an ideal state of affairs (wishful thinking), to a predicted reality (realistic, anticipated outcomes), to a normative anticipation (deserved, socially endorsed, what should happen), or they may be “unformed” (ie, no expectations or inability to express expectations).[50] The more acute and complicated the situation and the treatment, the less likely it is that the patient has a defined set of expectations regarding his or her involvement in treatment decisions. Preferences elicited from nonpatients probably reflect ideal or normative expectations; those elicited from chronic or cancer patients reflect realistic or culture-dependent expectations. Patients in acute distress may have unformed and bewildered expectations for participation in decisions regarding their management.

Further attempts to use FC instruments to determine the proportion of patients preferring a given model of doctor-patient relations are unlikely to yield clinically useful information. We believe that future studies of this subject should focus on three main unresolved issues. First, surveys in which multiple-item instruments, rather than forced-choice questionnaires, are used may provide a further insight into the various dimensions of the patients’ expectations and into specific aspects of the patients’ perspectives regarding their preferred relations with caregivers.

Second, it is uncertain whether physicians can always communicate probabilistic information about treatment out:comes in simple terms to those patients who want to participate in decision making. There is evidence that even well-educated subjects may be influenced by the framing and sequence of the presented information.[51-53] The methods of communicating health-related information to patients are still in need of study and development.

Last, the proportion of patients preferring a completely passive role, although small, may be as high as 8%. It is uncertain whether physicians should respect patients’ preferences for a total dependence on, or submission to, a paternalistic treatment style or whether physicians should attempt to convince the patient to agree to a participatory relationship.

ACKNOWLEDGMENT

This research was supported by a grant from the Chief Scientist’s Office, Ministry of Health of Israel, to Dr Benbassat.

NOTE

For further information, please address correspondence to Jochanan Benbassat, MD, JDC Brookdale Institute, Health Policy Research Program, PO Box 13087, Jerusalem 91130, Israel; e-mail benbasat@jdc.org.il

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Dr Benbassat is a professor of medicine and a research associate with the Health Research Policy Program at the JDC-Brookdale Institute in Jerusalem, Israel; Dr Pilpel is a senior lecturer in epidemiology in the Department of Community Health with the Faculty of Health Sciences at Ben-Gurion University of the Negev in Beer Sheva, where Ms Tidhar is a graduate student.

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