|
Advertisement |
|
|
||
 |
|
|||||
|
|||||
|
 |
||||||
|
||||||
|
||||||
|
© 2002 American Society for Clinical Oncology When the Treatment Goal Is Not Cure: Are Cancer Patients Equipped to Make Informed Decisions?ByFrom the Medical Psychology Unit and Department of Cancer, University of Sydney, and Royal North Shore Hospital, Sydney, New South Wales, Australia. Address reprint requests to Melina Gattellari, BSc, Needs Assessment and Health Outcomes Unit, Locked Bag 8, Newtown Sydney, New South Wales 2042, Australia; email: mgat9321{at}mail.usyd.edu.au
PURPOSE: Informed decision making now is considered the underpinning of ethical medical practice. We aimed to determine the extent to which patients with incurable cancer are adequately informed of their prognosis and treatment options and encouraged to participate in treatment decisions. PATIENTS AND METHODS: One hundred eighteen cancer patients with incurable disease presenting for an initial consultation with one of nine oncologists at two Sydney tertiary referral hospitals participated in the study. Consultations were recorded on audiotape to permit a content analysis of doctor-patient interactions. We devised a coding system to assess disclosure of information and to evaluate doctor encouragement of patient participation in treatment decision making. Patient recall, satisfaction, anxiety, and perceptions of the decision-making process were assessed to determine the effects of informed decision making on patient outcomes. RESULTS: Most patients were informed about the aim of anticancer treatment (84.7%), that their disease was incurable (74.6%), and about life expectancy (57.6%). An alternative to anticancer treatments was presented to 44.1%, 36.4% were informed about how anticancer treatment would affect quality of life, and 29.7% were offered a management choice. Oncologists checked patient understanding in only 10.2% of consultations. Although greater information disclosure did not seem to elevate anxiety levels, greater patient participation in the decision-making process was associated with increased anxiety levels (P = .0005), which persisted over a 2-week time span. CONCLUSION: Most patients were well informed, but important gaps remain, especially concerning information about prognosis and alternatives to anticancer treatment. These gaps invite the question concerning whether patients are led toward anticancer treatment.
PEOPLE WITH CANCER often confront complex and difficult decisions about treatment. For people with incurable cancer, the treatment decisions are further complicated because life expectancy is typically measured in months.1 Anticancer treatments in the palliative setting aim to delay or ease tumor-related symptoms, but these potential benefits are not guaranteed and may be offset by side effects and the inconvenience of attending a hospital for treatment. An alternative may be to forgo anticancer therapy and pursue symptom control with or without reference to palliative care facilities. However, patients with incurable cancer may pursue anticancer therapies without a full understanding of their situation. Weeks et al2 reported that while physicians were reasonably accurate at predicting life expectancy, in 82% of physician-patient pairs, patients overestimated their chances of living 6 months compared with their physicians. Patients who estimated their survival as greater than 6 months were more than twice as likely to receive life-extending therapy over comfort care compared with those who gave themselves at least a 10% chance of living for less than 6 months. To balance the goals of supporting patient values and limiting the use of "futile" interventions, the authors recommended that doctors engage patients in an honest discussion about prognosis and treatment and ensure that patients understand this information. The term "informed decision making" as opposed to "informed consent" has recently been defined in the research literature.3,4 Historically, the concept of informed consent has been interpreted as a legal rather than as an ethical obligation of doctors in order to preserve patient sovereignty. Although the Declaration of Helsinki5 codifies ethical practice for medical research, these principles have only recently been expanded to incorporate consent procedures for standard as well as experimental therapies.4,6 Redressing this double standard—in which more stringent criteria for obtaining consent were applied for research purposes—has changed the meaning of patient autonomy in modern-day medicine. The notion of informed consent has evolved from a term which essentially relegated the patient’s role to agreeing with a predetermined decision arrived at by doctors to one which emphasizes an open exchange of information and a sharing of values and preferences.3,4,7-9 Thus, the essence of informed decision making includes two broadly defined aspects: information disclosure and patient participation. With growing acknowledgment of patient participation in medical decision making, clinicians increasingly are aware of the need to inform patients about treatment options and encourage patient involvement in their medical care. Some treatments have the potential to produce only a relatively small absolute benefit. Therefore, there is a need to disclose the advantages and drawbacks of treatments and to encourage individual choice, as the best choice for any given patient may be sensitive to the value judgments she or he ascribes to treatment outcomes. However, some commentators warn that providing detailed information to those who do not want it and imposing choice on those who prefer their doctors to assume responsibility for making treatment decisions is harmful.10,11 An extensive literature base shows that a sizeable minority of cancer patients prefers to relinquish decisional control,12-19 particularly if faced with a dire prognosis. Therefore, advocating increased patient involvement in such patients may well endanger, rather than safeguard, patient autonomy. Given the current emphasis on patient participation, the implications of these trends in doctor-patient communication for patient well-being and satisfaction with medical care merit investigation. Braddock et al20 documented the process of informed decision making between patients and primary care physicians and surgeons using audiotapes of consultations. The researchers found that 9% of decisions met their definitions of informed decision making, with fewer than 10% including a discussion about treatment alternatives, risks, and uncertainties. To our knowledge, no prior study has explored the extent to which consultations between cancer patients and their oncologists meet definitions of informed consent. Moreover, the effect of patient involvement and the amount of information divulged on patient well-being is underresearched. We report the extent to which cancer patients with incurable cancer referred to two Australian tertiary outpatient clinics were enabled to make informed decisions about their treatment. We also determined predictors of informed decision making and explored the effect of information disclosure and encouragement of patient participation on patient well-being and satisfaction with their medical care.
Participants All patients with incurable disease who were eligible for palliative treatment were identified from an existing database collated from cancer patients who were involved in a study examining doctor-patient communication in oncology. Participants in that study were eligible for both palliative and curative therapy. These participants were consecutive outpatients presenting for their first consultation with one of nine oncologists at two Sydney teaching hospitals to discuss treatment options. Patients aware of their diagnosis and proficient in English were eligible to participate. Three hundred seventy patients were considered eligible to participate, and 335 consented (90.5%). Patients who refused participation most commonly reported feeling too anxious (n = 21). Ten patients were not interested in being involved, and four reported feeling too ill to participate. The proportion of refusers who were eligible for palliative treatment is not known because oncologists provided medical details of individual participants to researchers only if consent was granted. Doctors recorded on a form the participant’s stage of disease and length of illness and whether the goal of management was curative or palliative at the time of the first consultation. From these records, 118 patients with incurable disease eligible for palliative treatment were identified.
Procedure
Development of Content Analysis Coding System The content of verbatim transcripts of audiotape-recorded consultations was analyzed by two coders (M.G. and K.J.V.) who were blinded to patients’ questionnaire responses. A coding system was developed based on the informed decision-making and shared decision-making models.3,4,7-9 We applied the coding system to a pilot sample of 10 randomly selected consultations in order to refine the codes and generate new items where appropriate. The coding system consisted of 12 elements (Table 1). Seven elements described the content of information disclosed to patients considered to satisfy the criteria for informed decision making. Five elements described doctor behaviors that encouraged patient participation in treatment decision making. Thus, two measures were obtained: information disclosure and doctor encouragement of patient participation.
Transcripts were randomly assigned to coders. After coding was completed, each coder was randomly assigned 10% of transcripts from their own and the other’s samples to yield respective measures of intra- and interrater reliability. Reliability for each of the 12 elements ranged from "moderate" to "almost perfect," according to Landis and Koch’s classification21 (Table 2). Validity of the coding system was explored during analysis (see Results).
Patient Materials Assessment scales were selected that had established psychometric properties of validity and reliability (see references for psychometric properties) and had been used in previous studies of cancer populations. Anxiety was assessed using the 20-item Spielberger State-Anxiety Form,22 which has been widely used in studies of cancer patients (eg23,24), to produce a continuous score (range, 20 to 80). Higher values represent higher anxiety. Participants indicated the amount of information they wanted about their disease status, prognosis, and treatment using the Information Styles Questionnaire.18 Six items were rated on a 5-point Likert scale ranging from 1 ("absolutely want no more") to 5 ("want a great deal more"). Similarly, patients indicated the level of emotional support they desired in response to five items developed for the purpose of this study (eg, "assurance that I will be looked after well," "reassurance and hope"). Items were summed to produce two measures that assessed their total need for information (possible range, 6 to 30) and emotional support (possible range, 5 to 25). Higher scores indicated a greater need. Both measures had high internal reliability (alpha coefficient, 0.89 and 0.86). Preferences for decisional control were assessed using a validated and reliable question from previous studies in cancer patients.12-18,25,26 Patients were classified as wanting to play an active, passive, or collaborative role with their doctor when making treatment decisions. At 2-weeks’ follow-up, a modified version of this question25 asked patients to report the role they perceived they had played during decision making. Recall. During a structured telephone interview,27 patients were prompted to remember details doctors gave about prognosis (chances of cure, life expectancy) and treatment (type, regimen, associated side effects). A comparison between information presented and recalled was possible because consultations had been recorded on audiotape to allow us to check the accuracy of patient recall. Perceptions of news received. At the end of the telephone interview, patients were asked to rate the news they received from the oncologist on a 10-point scale, with 1 indicating they felt they were given the worst news they could have possibly received and 10 indicating the best news. Previous studies have shown that patients want less information if they perceive they are receiving bad news, supporting the validity of this measure.28 Perceptions of completeness of information. Patients indicated the amount of detail they received about their illness during the consultation on a 5-point scale ("minimum amount" to "maximum amount of details").29 Satisfaction. A standardized measure of patient satisfaction with doctor communication was also administered,30,31 with patients registering their level of agreement to 25 items using a 5-point scale. This measure assessed satisfaction with the manner in which doctors disclosed information, the information content, and the interpersonal skills of the clinician. Summed scores ranged between 25 and 125, with higher values indicating greater levels of satisfaction. Disease characteristics. Oncologists recorded cancer type, date of initial diagnosis, life expectancy, Eastern Cooperative Oncology Group performance status,32 and management goal for each patient enrolled onto the study. In addition, coders noted whether patients presented with either an initial diagnosis of metastatic disease or with recurrent disease and whether they were symptomatic at the time of the consultation (inter- and intrarater agreement was 100% for both variables).
Statistical Analysis Predictors of informed decision making. Variables presented in Table 3, except cancer type, were examined for association with information disclosure and doctor encouragement of participation using univariate linear regression analysis. Given Braddock et al’s20 finding of specialist differences in doctor communication, we also compared subjects according to whether they consulted a medical or radiation oncologist. The number of questions patients asked about their treatment was regarded as a measure of patient information needs during the consultation and therefore was tested as a predictor. As this variable was significantly skewed, we categorized patients into those who asked fewer than three questions and those who asked three or more questions about treatment. Variables demonstrating an association with the informed decision-making measures at the P < .25 level were entered into multiple linear regression analyses in order to appropriately account for confounding between predictors and the outcome.33 All variables meeting this entry criterion were entered into the model. By using a nonautomated elimination procedure, the least significant term was removed in successive steps until only significant predictors (P < .05) of information disclosure and patient encouragement remained. Variables were modelled as categorical if a nonlinear association with the outcome was demonstrated.33
Impact of informed decision making. The effect of informed decision making was also assessed for the following outcomes: perception of the amount of information received ("maximum amount" v others); number of treatment- and prognosis-related facts correctly recalled; perceived involvement in the decision-making process ("active" and "shared" v "passive"); satisfaction with the consultation; perceptions of information received in terms of "good" or "bad" news; and immediate- and 2-week postconsultation levels of anxiety (taking into account the repeated assessment of this outcome). Where either information disclosure or patient participation was associated with the outcomes at the P < .25 level, both variables were modelled in multivariate analyses in order to determine independent effects of each on the outcomes. Other potential predictor variables listed in Table 3, except cancer type, were also modelled if associated with any of the outcomes at the P < .25 level. All variables entered remained in the model to determine the independent effect of informed decision making above and beyond the effect of other potential predictors. To aid in interpreting our results, we presented the effect of information disclosure and doctor encouragement of participation as categorical, using quartile cutoff points to create the categories. For example, the lowest and highest quartiles represented categories of "minimal" and "maximal" disclosure or encouragement, respectively. We analyzed the data using a general linear mixed model approach to account for clustered patient sampling within doctor because failure to do so would increase the likelihood of making type I errors (ie, falsely declaring a significant effect where none exists).34 This approach accounts for similarities between patients consulting the same doctor, in terms of their characteristics and the doctor behaviors we coded. For example, it was likely that patients given ample encouragement to participate in treatment decision making consulted the same oncologists. Moreover, patients seeing one doctor may share disease and sociodemographic characteristics not shared by other patients seeing another oncologist. Our preliminary analysis confirmed the existence of clustering in this sample and therefore indicated the need to take into account the effect of this intracluster relationship in our analysis. We used PROC MIXED in SAS version 8.0 (SAS Institute, Cary, NC) to conduct these analyses. This study was approved by the Human Institutional Ethics Committee of the two teaching hospitals of the University of Sydney from which patients were recruited.
Sample Characteristics Consultations between 118 patients and nine oncologists fulfilled the study criteria. Patients’ average age was 60.5 years (SD, 11.84 years) and they presented at a median time of 8 months (interquartile range, 1 to 30 months) after their initial diagnosis. Most patients were male (64.4%) and presented with recurrent disease subsequent to an earlier diagnosis of cancer (55.9%). Patient need for information was generally high (median, 28 out of a possible 30). Emotional needs were comparatively less pronounced but were also skewed toward the higher end of the scale (Table 3).
Components/Elements of Informed Decision Making
In contrast, components assessing doctor encouragement of patient participation were less frequently featured. Doctors commonly acknowledged the uncertainty that treatment would achieve benefit (72.9%), discussed the trade-offs inherent in undergoing or foregoing therapy (60.2%), and elicited patient values about the treatment decision (69.5%). However, doctors offered choice to only 29.7% of patients and checked with 12 (10.2%) that they understood the information divulged about treatment. An average of 2.4 elements (SD, 1.23 elements) were featured in consultations. Two patients experienced all five elements, while seven patients did not experience any of these elements. When both the number of informational components and doctor facilitation of patient involvement were summed, an average of 7.0 elements (SD, 2.26 elements) were featured.
Validity of Coding System
Predictors of Information Disclosure and Doctor Encouragement of Patient Participation
Patient age, initial diagnosis of metastatic disease, specialist type, and question asking were significantly and independently associated with doctor encouragement of patient participation in decision making. Specifically, patients presenting with an initial diagnosis of metastatic disease, as opposed to recurrent disease, and those consulting with a medical oncologist received greater encouragement to participate (P = .03 and P = .002). Patients who asked more questions about treatment were also more likely to receive greater encouragement to participate (P = .004). In addition, middle-aged patients (that is, those whose ages fell within the second and third quartile) received greater encouragement to participate (mean, 2.7 for both groups). In comparison, the youngest and oldest patients in this sample received less encouragement (P = .046) (Table 5). However, patient preferences for decisional control, as assessed before the consultation, were not independently associated with this outcome (P = .27).
Effect of Informed Decision Making on Patient Outcomes
While disclosure of information was not independently associated with the number of facts patients recalled about treatment and prognosis (P = .10), doctor encouragement of patient participation was a significant predictor (P = .02). Recall seemed to increase with increasing encouragement (Table 6). Information disclosure was not predictive of anxiety (P = .11). However, greater encouragement to participate was independently associated with higher anxiety levels (P = .0005). Table 6 shows the adjusted effect of encouragement to participate immediately after the consultation and 2 weeks afterward, according to categories formed by using quartile cutoffs. The association seems to be clinically important. Although the association was approximately rather than clearly linear, mean levels of anxiety immediately after the consultation were lowest for patients receiving "minimal" encouragement (that is, the lowest quartile cutoff group) (mean, 30.7) and ranged from 36.5 to 40.1 for other patients. A linear effect was more pronounced at 2 weeks, with the lowest mean anxiety scores demonstrated for patients receiving minimal encouragement (mean, 34.7) and the highest for those patients receiving the greatest degree of encouragement (mean, 44.2). We conducted a post hoc analysis to explore changes in the relationship between anxiety and both doctor encouragement and information disclosure, across the two time points. The relationship between anxiety and doctor encouragement of participation did not differ at 2 weeks after the consultation compared with immediately afterward (P = .11), which indicates that the effect of doctor encouragement did not change over time. However, the relationship between information disclosure and anxiety did seem to change (P = .02). Anxiety levels remained relatively stable across time for patients who received comparatively more information. In contrast, anxiety seemed to increase across the two time points for those who received less information (Table 6). For example, immediately after the consultation, patients who had received minimal information had an average anxiety score of 39.9. At 2 weeks, anxiety scores had increased to 46.4. However, we recommend caution in interpreting this finding because of to the post hoc nature of the analysis. Finally, neither information disclosure nor encouragement to participate was significantly associated with patient satisfaction with the consultation (P = .61 and P = .61, respectively) or with patient ratings of the news doctors gave them (P = .54 and P = .24, respectively).
This study of Australian cancer patients documents the extent to which people with incurable cancer are enabled to make an informed decision about receiving anticancer therapy. Previous studies have assessed patient recall as a proxy measure of informed choice,35-37 whereas our method examined the dialogue between oncologists and cancer patients. A minority of patients in this Australian sample experienced consultations in which all information and shared decision-making elements were featured. Doctors seemed more likely to disclose information than facilitate patient participation. While medicolegal developments may have raised doctors’ awareness of the need to disclose information, only recently have researchers given emphasis to how patients can be involved in the decision-making process. Patient information needs and preferences for involvement recorded before the consultation were not predictive of information giving or patient participation. However, patient question asking, an overt information-seeking behavior and an obvious indicator of patient involvement, was associated with both information disclosure and doctor encouragement of patient participation. While not surprising, these results do suggest that doctors have difficulty perceiving patient preferences unless given a clear indication of them. Alternatively, current methods of assessing preconsultation information and involvement preferences may not be a valid reflection of patient needs during the consultation. Patients also may be reluctant to communicate their needs to doctors for a variety of reasons. For example, patients may lack the confidence to assert their needs during the consultation and may worry about annoying their doctor or appearing to question his or her authority. These factors may be especially applicable when patients are meeting their doctor for the first time. Alternatively, patients may fear information and prefer to delegate decision making to doctors. Therefore, the oncologists in this study may have responded to subtle cues from patients and appropriately tailored information and encouragement of participation to the wishes of their patients. However, barriers to patient involvement also exist because doctors may dominate consultations, a behavior that limits opportunities for patients to voice their concerns.38,39 Most patients in this study were told the aim of treatment, were informed their disease was incurable, and were made aware of the uncertainty that treatment would achieve a benefit. Gaps in communication were noted. A minority of patients was given information about life expectancy and alternatives to anticancer therapy, while few were explicitly offered a choice and given space in the consultation to clarify their understanding. Discussing alternatives to anticancer treatments is arguably an essential element for informed decision making. Failure to present treatment alternatives and discuss prognosis is concerning in light of Weeks et al’s2 finding that patients with metastatic disease typically overestimate prognosis and those who do so are more likely to favor life-extending treatment, perhaps to the detriment of quality of life. Reasons for this nondisclosure are unclear. Patients referred to oncologists may be preselected by referring doctors, which suggests that the decision at hand may be a fait accompli. For example, referring doctors may recommend consultations with oncologists only for those patients deemed to benefit from anticancer therapies; therefore, offering and recommending anticancer therapies would be appropriate. In addition, some patients may seek consultations with oncologists to explore active treatment options. Nonetheless, patients may expect an offer of anticancer treatment and be reluctant to engage oncologists in a discussion about symptomatic care. Further, clinicians may believe that offering anticancer treatments and avoiding discussion of prognosis both preserve and give hope. That patients and doctors somehow collude to avoid discussing prognosis is suggested in findings from qualitative research.40 Information giving and encouragement to participate seem to depend on patient and disease factors. In this study, patients most recently diagnosed were given more information, whereas those presenting with an initial diagnosis of metastatic disease received greater encouragement to become involved in treatment decision making. Doctors may have singled out these patients as having special needs, perhaps believing that recently diagnosed patients were less knowledgeable about treatment issues. Moreover, the oncologists may have considered it important to facilitate patient involvement for those without prior experience with a cancer diagnosis and treatment. For example, recently diagnosed patients would not have had the benefit of earlier experience with medical specialists, prior treatments, or even simply the extra time afforded to those who were diagnosed earlier. Therefore, oncologists may have been sensitive to these factors and more likely to engage these patients in detailed discussions. In addition, relatively young and old patients were less likely to receive encouragement to participate in decision making. Doctors may have perceived that older patients would prefer doctors to dominate in making decisions, but it is unclear why younger patients did not receive more encouragement. It may be that younger patients are perceived to be more emotionally vulnerable by oncologists. It is possible that the clinicians in this sample (who were mostly middle-aged) may have felt most comfortable relating to patients most like themselves. Like Braddock et al,20 we found that informed decision making varied according to clinician speciality. The reasons for this are unclear. One reason may be that medical oncologists are more familiar with informed consent procedures because they participate in more clinical trials.41 However, this difference could be an artifact of the small sample of doctors. Therefore, a larger study of a broader cross-section of doctors and patients is required to assess more meaningfully interspecialty and doctor differences. Our data provide some answers to the question of whether informed consent is beneficial or "needlessly cruel."10 Importantly, increased information was not associated with increased anxiety, thereby countering concerns that information about prognosis, disease, and treatments is psychologically harmful to patients.10 Indeed, our results suggested that a lack of information may heighten anxiety, especially after patients have had time to reflect on the consultation. As our group and others have suggested,42-44 patients may not value information simply for its content. Instead, information disclosure may be important for the development of a trusting relationship with doctors. Patients may perceive doctors as open and honest when forthcoming with information, but when information is not detailed, their suspicions may be raised that doctors are withholding potentially frightening information. Therefore, information disclosure may reassure patients and counteract their anxiety. However, increased encouragement to participate was associated with elevated anxiety levels that were unresolved at 2 weeks. This finding replicates that of Simes et al,45 who found that soliciting informed consent from patients for clinical trials raised anxiety levels. Previous experience may condition patients to expect that their doctors will assume responsibility for making decisions, which reinforces the perception that the only appropriate role for patients is a passive one. Perhaps being encouraged to participate may have provoked anxiety because patients’ expectations of what was required of them given their past experiences (that is, minimal involvement) were contradicted by what they perceived as the doctor’s expectations for active patient involvement. Therefore, patients may have felt ill-equipped to make their own decisions (especially in a new environment) and perhaps felt pressured to play a role with which they were not familiar or comfortable. Others have hypothesized that patients wish to avoid regret and self-blame for negative consequences associated with a poor decision.46 According to this argument, patients have much vested emotionally in the belief that there is no real option other than to accept the advice of the doctor and to regard the doctor as the one with the necessary expertise to make treatment choices. When asked to shoulder some of the responsibility for decision making, patients may feel burdened by the significance and consequences of making treatment decisions and prefer a trusted expert to be accountable for the choices made. Anxiety may also be an indicator of "decisional conflict," as patients anticipate feeling regretful of forgoing benefits perceived in the options presented, however they decide.47 One hypothesis of decisional conflict theory is that initial anxiety incurred by a difficult decision will dissipate over time,47 after which an increased sense of control may confer psychological benefits in the long-term. Therefore, one needs to question the assumption that anxiety is an adverse outcome and avoid implying that doctors should deter patients from becoming involved in medical decisions in order to minimize patient distress. If anxiety is an indicator of decisional conflict, patients may be motivated to discuss options with others, gather more information, and/or rely on other coping mechanisms in order to resolve this conflict. This may result in positive outcomes, such as an increased sense of control over the situation, reduced anxiety in the long term, and enhanced decision-making capabilities. Notably, one positive outcome of increased patient participation was improved recall. It seems that the increased anxiety associated with greater encouragement did not impede patients’ ability to absorb and retain information. This finding prompts speculation that being an active rather than a passive recipient of information facilitates the encoding and recall of facts presented. This argument is further supported by the finding that greater information provision was not independently associated with better recall, which suggests that providing information is insufficient to ensure patient understanding. It may also indicate cognitive limitations in people’s ability to absorb information, especially in a potentially emotionally charged situation. Alternatively, the comprehensibility of the information disclosed may also be implicated. However, we previously demonstrated that poor recall is partly due to patients using denial-like coping strategies to screen out threatening information.37 We did not investigate the effect of information giving and doctor encouragement of patient participation on actual treatment decisions because these data were not available to us. We argue, however, that the actual treatment decision may not be relevant, because an optimal decision does not depend on the actual choice but on how that decision is reached. Moreover, we also did not assess how well the information was conveyed to patients. Subtle aspects of language, such as framing and nonverbal cues, may bias presentation of facts,48 and other properties of language may also convey important cues for encouraging or discouraging patient involvement. Moreover, the emotional character of doctor-patient interactions, such as number of empathic exchanges and the extent of emotional rapport between the two parties, may modify the effects of information disclosure and encouragement to participate. Our judgments on how well patients can make informed decisions are limited by the scope of the coding system. For example, our system specified that doctors must explicitly offer choice to patients and ask them to voice their preferences. However, less direct forms of questioning may also permit patients to choose treatment and express their preferences. While we demonstrated the validity and reliability of the system, further research is required to canvas the views of physicians, patients, and patients’ families regarding what they believe comprises an informed decision. These views then can be incorporated into criteria for future research. Finally, the small sample of doctors and the Australian context limit the generalizability of these findings. However, the study may have wider relevance because these Australian patients share information and involvement preferences similar to those of patients elsewhere.13-17,35,36,49 Australia, the United States, Canada, and the United Kingdom have all promulgated guidelines for information disclosure for cancer patients50-53 suggesting that physicians within these countries are all grappling with how to best inform their patients and ensure that treatment decisions are compatible with patients’ needs and values. In summary, unlike Braddock et al’s20 findings, our study demonstrated that this sample of Australian cancer patients is generally well informed but may not be aware of their prognosis and alternatives to anticancer treatment. Without this knowledge, it is questionable whether patients are adequately equipped to make informed decisions. Our finding that encouragement to participate resulted in heightened patient anxiety warrants further investigation to elucidate the meaning and implications of this result.
Supported by the National Health and Medical Research Council of Australia and by a New South Wales Cancer Council Patient Care Award. The authors gratefully acknowledge the oncologists and the patients who freely gave their time to participate in the study. The assistance of Richard Brown, Robyn Miller, and Megan Miller in recruiting participants is also gratefully acknowledged. The authors also thank Elizabeth Dent for diligently assessing patient recall and transcribing audiotapes and Judy Hood for transcribing audiotapes.
1. Tattersall MH, Thomas H: Recent advances: Oncology. BMJ 318: 445–448, 1999
2.
Weeks JC, Cook EF, O’Day SJ, et al: Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 279: 1709–1714, 1998 3. Charles C, Gafni A, Whelan T: Shared decision making in the medical encounter: What does it mean? (Or it takes at least two to tango). Soc Sci Med 44: 681–692, 1997 4. Feste C, Anderson RM: Empowerment: From philosophy to practice. Patient Educ Couns 26: 139–144, 1995[CrossRef][Medline]
5.
World Medical Assembly (1964; 1996): The Declaration of Helsinki. BMJ 313: 1448–1449, 1996
6.
Segelov E, Tattersall MH, Coates AS: Redressing the balance: The ethics of not entering an eligible patient on a randomised clinical trial. Ann Oncol 3: 103–105, 1992
7.
Emanuel EJ, Emanuel LL: Four models of the physician-patient relationship. JAMA 267: 2221–2226, 1992
8.
Quill TE, Brody H: Physician recommendations and patient autonomy: Finding a balance between power and patient choice. Ann Intern Med 125: 763–769, 1996 9. Gafni A, Charles C, Whelan T: The physician-patient encounter: The physician as a perfect agent for the patient versus the informed treatment decision making model. Soc Sci Med 47: 347–354, 1998 10. Tobias JS, Souhami RL: Fully informed consent can be needlessly cruel. BMJ 307: 1199–1201, 1993 11. Fallowfield L: Offering choice of surgical treatment to women with breast cancer. Patient Educ Couns 30: 209–214, 1997[CrossRef][Medline]
12.
Butow PN, Maclean M, Dunn SM, et al: The dynamics of change: Cancer patients’ preferences for information, involvement and support. Ann Oncol 8: 857–863, 1997 13. Degner LF, Sloan JA: Decision making during serious illness: What role do patients really want to play? J Clin Epidemiol 45: 941–950, 1992[CrossRef][Medline] 14. Beaver K, Luker KA, Owens RG, et al: Treatment decision making in women newly diagnosed with breast cancer. Cancer Nurs 19: 8–19, 1996[CrossRef][Medline] 15. Bilodeau BA, Degner LF: Information needs, sources of information, and decisional roles in women with breast cancer. Oncol Nurs Forum 23: 691–696, 1996[Medline]
16.
Degner LF, Kristjanson LJ, Bowman D, et al: Information needs and decisional preferences in women with breast cancer. JAMA 277: 1485–1492, 1997 17. Degner LF, Sloan JA, Venkatesh P: The decisional control preferences scale. Can J Nurs Res 29: 21–43, 1997[Medline] 18. Cassileth BR, Zupkis RV, Sutton Smith K, et al: Information and participation preferences among cancer patients. Ann Intern Med 92: 832–836, 1980 19. Sutherland HJ, Llewellyn-Thomas HA, Lockwood GA, et al: Cancer patients: Their desire for information and participation in treatment decisions. J R Soc Med 82: 260–263, 1989[Abstract]
20.
Braddock CH 3rd, Edwards KA, Hasenberg NM, et al: Informed decision making in outpatient practice: Time to get back to basics. JAMA 282: 2313–2320, 1999 21. Landis JR, Koch GG: The measurement of observer agreement for categorical data. Biometrics 33: 59–74, 1997 22. Spielberger: Manual for the State-Trait Anxiety Inventory. Palo Alto, CA, Consulting Psychologists Press, 1981
23.
Fogarty LA, Curbow BA, Wingard JR, et al: Can 40 seconds of compassion reduce patient anxiety? J Clin Oncol 17: 371–379, 1999 24. Poulsen B, Graversen HP, Beckmann J, et al: A comparative study of post-operative psychosocial function in women with primary operable breast cancer randomized to breast conservation therapy or mastectomy. Eur J Surg Cancer 23: 327–334, 1997 25. Degner LF, Kristjanson LJ, Bowman D, et al: Information needs and decisional preferences in women with breast cancer. JAMA 277: 1485–1492, 1997
26.
Strull WM, Lo B, Charles G: Do patients want to participate in medical decision making? JAMA 252: 2990–2994, 1984
27.
Dunn SM, Butow PN, Tattersall MH, et al: General information tapes inhibit recall of the cancer consultation. J Clin Oncol 11: 2279–2285, 1993 28. Damian D, Tattersall MH: Letters to patients: Improving communication in cancer care. Lancet 338: 923–925, 1991[CrossRef][Medline]
29.
Butow PN, Dunn SM, Tattersall MH, et al: Patient participation in the cancer consultation: Evaluation of a question prompt sheet. Ann Oncol 5: 199–204, 1994
30.
Korsch BM, Gozzi EK, Francis V: Gaps in doctor-patient communication: 1. Doctor-patient interaction and patient satisfaction. Pediatrics 42: 855–871, 1968 31. Roter DL: Patient participation in the patient provider interaction: The effects of patient question asking on the quality of interaction, satisfaction, and compliance. Health Educ Monogr 5: 281–315, 1977[Medline] 32. Conill C, Verger E, Salamero M: Performance status assessment in cancer patients. Cancer 65: 1864–1866, 1990[CrossRef][Medline] 33. Hosmer D, Lemeshow S: Applied Logistic Regression ( ed 2 ). New York NY, John Wiley and Sons, 2000 34. Murray DM: Design and Analysis of Group Randomized Trials. New York NY, Oxford University Press, 1998 35. Mackillop WJ, Stewart WE, Ginsberg AD, et al: Cancer patients’ perceptions of their disease and its treatment. Br J Cancer 58: 355–358, 1988[Medline] 36. Siminoff LA, Fetting JH, Abeloff MD: Doctor-patient communication about breast cancer adjuvant therapy. J Clin Oncol 7: 1192–1200, 1989[Abstract]
37.
Gattellari M, Butow PN, Tattersall MHN, et al: Misunderstanding in cancer patients: Why shoot the messenger? Ann Oncol 10: 39–46, 1999 38. Butow PN, Dunn SM, Tattersall MHN, et al: Computer-based interaction analysis of the cancer consultation. Br J Cancer 71: 1115–1121, 1995[Medline] 39. Ford S, Fallowfield L, Lewis S: Doctor-patient interactions in oncology. Soc Sci Med 42: 1511–1519, 1996 40. Miyaji NT: The power of compassion: Truth-telling among American doctors in the care of dying patients. Soc Sci Med 36: 249–264, 1993 41. Ellis PM, Butow PN, Simes RJ, et al: Barriers to participation in randomised controlled trials for early breast cancer among Australian cancer specialists. Aust N Z J Surg 69: 486–491, 1999[CrossRef][Medline] 42. Butow PN, Dunn SM, Tattersall MHN: Denial, misinformation and the assault of truth, in Portenoy RK, Bruera E (eds): Topics in Palliative Care, Vol 1, New York NY, Oxford University Press, 1997, pp 213–244 43. Hack TF, Degner LF, Dyck DG: Relationship between preferences for decisional control and illness information among women with breast cancer: A quantitative and qualitative analysis. Soc Sci Med 39: 279–289, 1994 44. Charavel M, Bremond A, Moumjid-Ferdjaoui N, et al: Shared decision making in question. Psychooncology 10: 93–102, 2001[CrossRef][Medline] 45. Simes RJ, Tattersall MH, Coates AS, et al: Randomised comparison of procedures for obtaining informed consent in clinical trials of treatment for cancer. BMJ 293: 1065–1068, 1986[Medline] 46. Ubel PA, Loewenstein G: The role of decision analysis in informed consent: Choosing between intuition and systematicity. Soc Sci Med 44: 647–656, 1997
47.
O’Connor AM: Validation of a decisional conflict scale. Med Dec Making 15: 25–30, 1995 48. O’Connor AM: Effects of framing and level of probability on patients’ preferences for cancer chemotherapy. J Clin Epidemiol 42: 119–126, 1989[CrossRef][Medline]
49.
Meredith C, Symonds P, Webster L, et al: Information needs of cancer patients in west Scotland: Cross-sectional survey of patients’ views. BMJ 313: 724–726, 1996 50. Department of Health: The patient’s charter and you: A charter for England. Http://www.doh.gov.uk/pcharter/patienth.htm
51.
Climent J: US Senate passes patients’ bill of rights. BMJ 319: 209, 1999 52. Charles C, DeMaio S: Lay participation in health care decision making: A conceptual framework. J Health Polit Policy Law 18: 881–904, 1993 53. National Health and Medical Research Council: General Guidelines for Medical Practitioners on Providing Information to Patients. Canberra Australia, Commonwealth of Australia, Australian Government Publishing Service, 1993 Submitted November 9, 2000; accepted September 5, 2001.
This article has been cited by other articles:
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|||||||||||
|
|||||||||||
|
|
Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
|
TOP
ABSTRACT
INTRODUCTION
