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Desire for Information and Involvement in Treatment Decisions: Elderly Cancer Patients' Preferences and Their Physicians' Perceptions

Elena B. Elkin, Susie H.M. Kim, Ephraim S. Casper, David W. Kissane, Deborah Schrag

From the Health Outcomes Research Group, Department of Epidemiology and Biostatistics, Department of Medicine, and Department of Psychiatry, Memorial Sloan-Kettering Cancer Center, New York, NY

Address reprint requests to Elena B. Elkin, PhD, Health Outcomes Research Group, Department of Epidemiology and Biostatistics, Memorial Sloan-Kettering Cancer Center, 1275 York Ave, Box 44, New York, NY 10021; e-mail: elkine{at}mskcc.org

	ABSTRACT

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Purpose Shared decision making is a tenet of contemporary medicine and oncology practice. How involved elderly patients want to be in making treatment decisions and how physicians perceive patient preferences for such involvement are uncertain.

Patients and Methods In structured interviews about multiple facets of chemotherapy treatment decision making, we asked patients age 70 years and older with a recent diagnosis of metastatic colorectal cancer (CRC) about their preferences for prognostic information and for involvement in treatment decision making. We also asked treating oncologists (n = 19) to describe their perceptions of patient preferences. Information and decision-making preferences were evaluated in relation to sociodemographic and clinical characteristics.

Results Seventy-three patients age 70 to 89 years completed the study interview within 16 weeks of metastatic CRC diagnosis. Most patients (n = 70; 96%) had decided to receive chemotherapy and 61 had initiated treatment. Relatively few (n = 32; 44%) wanted information about expected survival when they made a treatment decision. Preference for prognostic information was more common among men than women (56% v 29%; P < .05). About half of the patients (n = 38; 52%) preferred a passive role in the treatment decision-making process. Physician perceptions were concordant with patient preferences for information in 44% of patient-physician pairs and for decision control in 41% of patient-physician pairs.

Conclusion For older patients with advanced CRC, preferences for prognostic information and for an active role in treatment decision making are not easily predictable. Physicians' perceptions are often inconsistent with patients' stated preferences. Explicit discussion of preferred decision-making styles may improve patient-physician encounters.

	INTRODUCTION

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Patients diagnosed with cancer at age 70 years or older do not always receive the same cancer treatment as their younger counterparts.^1-3 From both the physician's and patient's perspectives, there are several factors that may explain age-related variations in patterns of care. Physicians may recommend different therapies for their older patients because of concerns about comorbidity and toxicity, limited life expectancy, or estimates of a low ratio of treatment benefits to risks. The danger is that older patients may forgo worthwhile treatment options because of limited insight into their diagnosis and prognosis, exogenous barriers to receiving care, or perceptions of a low ratio of benefits to risks. Conversely, without adequate understanding of prognosis and of the potential outcomes of therapy, patients may receive treatments that are inconsistent with their preferences.

Although chemotherapy has been shown to extend progression-free and overall survival in elderly colorectal cancer (CRC) patients,^4-6 clinical trials generally have either excluded or under-represented older patients.^7-9 With little informative data from clinical trials, physicians typically make individual treatment decisions based on the elderly patient's functional status, life expectancy, and preferences. Treatment recommendations may range from the standards recommended to younger patients, to less intensive variations of standard regimens, to best supportive care.

In situations for which several different treatment strategies are feasible, and the choice of strategy depends on individual patient characteristics and preferences, shared decision making has been advocated.^10,11 However, preferences for prognostic information and for participation in the decision-making process may vary substantially across patients. Older patients in particular may opt for limited involvement in treatment decisions, preferring to leave the choice of treatment to the physician.^12-15 Our objective was to assess preferences for prognostic information and involvement in treatment decision making among elderly patients with advanced CRC, and the relationship between preferences and patient characteristics. A second objective was to compare patients' stated preferences with the perceptions of their oncologists.

	PATIENTS AND METHODS

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Sample
We recruited patients seen for metastatic CRC at the main outpatient facility of Memorial Sloan-Kettering Cancer Center (MSKCC, New York, NY) or at one of four outpatient facilities in the MSKCC Regional Care Network. The network sites, staffed by full-time MSKCC faculty, serve patients in nearby New York and New Jersey suburbs. Patients were eligible for the study if their diagnosis was made within 16 weeks of recruitment, if they were at least 70 years old at the time of diagnosis, and if they were able to speak and read English. We excluded patients with cognitive impairment (indicated in the medical record or by the attending oncologist) that prevented them from providing informed consent.

With permission from each patient's attending physician, we contacted eligible patients by phone after they had at least one medical oncology visit that involved a discussion of treatment options. Patients who expressed willingness to participate were approached at their next visit by a research interviewer who obtained informed consent and conducted the study interview.

From July 2004 through May 2006, 254 patients age 70 years were seen by a medical oncologist at MSKCC within 16 weeks of a diagnosis of metastatic CRC. Of these patients, 28 did not speak English, two were cognitively impaired, and 17 died or entered hospice before they could be recruited. An additional 93 patients were seeking second opinions and did not return to MSKCC within 16 weeks of diagnosis. For seven of the 114 eligible patients, the attending physician denied permission to recruit the patient, for reasons related to failing health, psychosocial problems, or other concerns. Of the 107 patients who were invited to participate, 75 consented. Two patients who provided informed consent subsequently withdrew from the study, leaving 73 patients for analysis (68% response rate).

Patient Interview
The research interview consisted of an interviewer-administered structured questionnaire with a total of 62 items in the following four domains: preference for prognostic information, preference for decision control, treatment decision and understanding, and functional assessment and background information.

Preference for prognostic information. We asked patients a series of questions regarding their desire for prognostic information. The first item was phrased in this way: "Nobody can say for certain how long you or any other person will live. But I'd like to know if your doctor gave you some idea about how long people with your type of cancer typically survive after they are diagnosed. Did your doctor give you this information?" Patients who responded affirmatively to this question were asked, "About how long did your doctor say that people your age with your type of cancer usually live after they are diagnosed?" Regardless of their response to the first question, all patients were asked if they wanted information about expected survival.

Preference for decision control. The Control Preference Scale, developed by Degner and Sloan,^16,17 assesses the degree of involvement patients prefer in their medical decision making. Patients were asked to select one of five statements that best reflects their preference for decision control (Table 1). These statements indicate preference for an active (responses A and B), collaborative (response C), or passive (responses D and E) role in treatment decision making.

Functional assessment and background information. We assessed impairment in five basic activities of daily living (bathing, dressing, toileting, transferring, feeding)²⁰ and nine instrumental activities of daily living (grooming, cooking, walking, chores, transportation, shopping, using the telephone, managing money, taking medication).²¹ Additional items included marital status, education, employment status, and habitation alone or with others.

The study interview lasted 25 to 45 minutes. Information regarding disease characteristics, cancer treatment, and medical history was abstracted from medical records. On the basis of conditions listed in the patient's medical record, we assessed comorbidity using the Charlson comorbidity index.²² The institutional review board at MSKCC reviewed and approved this study.

Physician Interview
We interviewed each patient's attending medical oncologist to ascertain the physician's perceptions of the patient's preferences for prognostic information and involvement in decision making. Physicians were asked whether they thought the patient wanted information about expected survival and which of the Control Preference Scale responses best described the patient's preferred role in treatment decision making. Physician interviews were completed with 19 oncologists for 61 of the 73 patients in the sample. The number of patients per physician varied from one to 10 with a median of two and a mode of one. Because physician interviews were conducted several weeks to several months after the initial treatment discussion, to facilitate recall we provided the physician with a copy of his or her consultation notes and treatment orders. The physician interview for each patient was conducted by one investigator (E.B.E.) after the patient interview, conducted by other study personnel, was completed.

Statistical Analysis
Relationships between individual item responses and patient characteristics were assessed using ² tests or Fisher's exact test. The small sample size precluded multivariable analysis for the estimation of adjusted associations. To assess agreement between patients' stated preferences and physician perceptions of patient preferences, we calculated the percent of concordant responses and unweighted and weighted coefficients.²³ In analyses of decision control preference, the five response categories were collapsed into the three role types (active, collaborative, or passive).

	RESULTS

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The 73 patients who completed the study interview ranged in age from 70 to 89 years, with a mean of 76 years (Table 2). About half of the patients were male, 62% had some post–high school education, 16% were working full time or part time, 66% were married, and 22% lived alone. Nearly all were white, non-Hispanic. Performance status, assessed by Eastern Cooperative Oncology Group criteria,²⁴ was rated as 0 or 1 in approximately 80% of patients, and Charlson comorbidity score was 0 or 1 for 88% of patients. Slightly more than half were newly diagnosed with stage IV disease (as opposed to recurrent disease), and extent of metastasis varied from no evidence of disease after resection of metastases (6%) to three or more metastatic sites (6%), with a majority of patients (88%) having evidence of disease in one or two sites, primarily the liver and lung (data not shown). With respect to age, sex, marital status, and diagnosis, study participants were not significantly different from patients who refused to participate or did not return for follow-up (data not shown).

Preference for Prognostic Information
Overall, 44% of patients (n = 32) reported that they wanted information regarding expected survival at the time of their initial treatment discussion. Preference for prognostic information (Table 2) was associated with being male (P < .05). Older patients and those with more education or comorbid illness were more likely to express a preference for prognostic information, but these associations were not statistically significant.

Only one fourth of patients (n = 18) reported that they received information from their attending physician regarding expected survival. This included 13 of the 32 patients who expressed a preference for prognostic information and five of the 41 who did not. Receipt of information about expected survival was associated with one element of treatment understanding. A majority of patients said, appropriately, that chemotherapy was somewhat likely or very likely to extend life, relieve cancer symptoms, and have adverse effects. Although a majority of patients also said that chemotherapy was somewhat likely or very likely to cure their cancer, this inappropriate belief was less common among those who had received prognostic information from their physician compared with those who said they had not (P < .01). Neither preference for nor receipt of prognostic information was associated with treatment decision satisfaction; overall, 61 patients (84%) expressed agreement or strong agreement with all seven items assessing decision satisfaction.

Preference for Decision Control
Half of the patients (n = 38; 52%) favored a passive role in treatment decision making, while 25% favored an active role and 23% favored a collaborative role. Disaggregating the two responses that reflect a passive role preference, we observed that a full one fourth (n = 18) of all patients preferred to leave all decisions regarding treatment to their physician (response E). Slightly more than one fourth (n = 20) preferred that the physician make the final treatment decision after seriously considering the patient's opinion (response D), reflecting a less passive, but still subordinate role. Preference for a passive role (response D or E) was more common among patients who were older, female, had less education, poorer performance status, more comorbid illness, or newly diagnosed cancer (as opposed to recurrent disease), but these associations were not statistically significant (Table 3).

	DISCUSSION

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Our results differ considerably from those of Bruera et al,²⁵ who conducted a similar study of younger adults with advanced cancer (mean age, 62 years). They found that nearly 50% of patients preferred a collaborative role in decision making. In a similar study of breast cancer patients, they found even stronger preferences for a collaborative role (preferred by 67%).²⁶ In contrast, the elderly patients we interviewed were much less likely to prefer a collaborative role (preferred by 25%).

Although the proportion of patients preferring an active or collaborative role in decision making varies across studies, a consistent finding is the discordance between patients' stated preferences and the perceptions of their physicians. In our study and in studies of hospitalized¹⁴ and outpatient palliative care patients,²⁵ and women with breast cancer,²⁶ physician perceptions and patient preferences for involvement in decision making were concordant in a minority of cases. The observed discordance might reflect inaccurate perception on the part of the clinician, but this may also be attributable to differences between patients' stated role preferences and their actual behavior. A study of men considering prostate cancer screening found that the actual roles patients assumed in the decision-making process, though not necessarily their preferred roles, were highly correlated with the perceptions of their family practitioners.²⁷ Other studies show that patients often do not achieve the decision-making roles they desire.^13,28-30

Our finding that many patients had the unrealistic expectation that chemotherapy for advanced CRC can achieve a cure may be explained in part by patients’ selective retention of favorable information. When physicians disclose bad news, they may juxtapose the probable outcome of limited life expectancy with the possible outcome of substantial treatment benefit. In a prior study of treatment preferences, patients' estimates of their chances for survival were correlated with a preference for life-extending therapy.³¹ In another study of older patients with limited life expectancy due to serious illness, patients with the most optimistic perception of their prognosis were also the least likely to say that they wanted to discuss life expectancy with their physician.³² In our study, patients who wanted prognostic information were more likely to receive it and also more likely to have a realistic understanding of the goals of therapy.

Although not statistically significant, our results support earlier findings that educational attainment is positively correlated with the preference for an active role in medical decision making.^12-15,30 Our finding that male sex was associated with a preference for information about expected survival is notable in light of some prior evidence that women prefer more detailed prognostic information than men.³³ It is not clear whether the relationship between sex and information preference is confounded by other factors.

Because our sample was restricted to patients age 70 years and older, we cannot directly compare the information and decision control preferences of this group with the preferences of younger patients. Prior research suggests a positive association between older age and the preference for a passive role in treatment decision making.^12-15,34 However, preferences for decision control are highly variable within age groups, and there is no evidence that clinicians perceive the preferences of their older patients more accurately than those of their younger patients.²⁵

The primary limitations of our analysis are the small sample size and restriction to the population of a single institution. Although recruitment of patients from community-based clinics enhanced sample diversity with respect to patient age, nearly all patients in the study were non-Hispanic whites, and almost two thirds had some college education.

As with any retrospective survey, ours faces the possible influence of problems with recall and social desirability response bias. Researchers who have recorded patient-physician encounters have found marked variation in how oncologists communicate with their patients based on patient characteristics.^35-39 Although recording encounters would have permitted a more objective assessment of clinician-patient discussions, the simple act of observing such interactions may influence their content. In addition, studies in primary care settings suggest that patients' perceptions of communication may be more important than the actual communication, with respect to patient behavior and health outcomes.^40,41

In the setting of advanced cancer that is rarely curable, informed treatment decisions require clear, detailed communication between a patient and his or her oncologist. Despite widespread acceptance of the physician's duty to inform and educate patients, physicians may engage in a process of "necessary collusion," conveying unfavorable and uncertain prognostic information when prompted by the patient's explicit or implicit cues.⁴² This approach presumes that physicians accurately perceive their patients' wishes with or without discussion of their desire for information. Our results suggest that explicit elicitation of information and decision-making preferences may facilitate patient-physician interactions, because even highly skilled clinicians may not accurately perceive their patients' preferences.

Patient-physician communication has not been a standard component of oncology training. Back and Arnold^43,44 show how a few simple questions can help oncologists distinguish patients who want explicit prognostic information from those who do not, and then proceed to share information tailored to the patient's preferences. Formal training programs, often including review and critique of videotaped encounters with actors or actual patients, may also improve physicians' communication skills.⁴⁵

Recent decades have seen a shift away from paternalistic medicine, in which the provider serves as the primary decision maker, to shared decision-making approaches that require the participation of both physician and patient in the medical decision-making process.⁴⁶ Although empirical evidence supports an association between more collaborative decision making and higher short-term satisfaction with both the choice of treatment and the decision-making process,^29,47 shared decision making is not an optimal approach for all patients, particularly those who prefer a passive role. Explicit communication about decision-making preferences may help physicians identify the patients who will benefit most from shared decision making and help patients achieve their desired roles in the decision-making process.

	AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

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The author(s) indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

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Conception and design: Elena B. Elkin, Ephraim S. Casper, David W. Kissane, Deborah Schrag

Financial support: Deborah Schrag

Administrative support: Susie H.M. Kim

Provision of study materials or patients: Ephraim S. Casper, Deborah Schrag

Collection and assembly of data: Elena B. Elkin, Susie H.M. Kim

Data analysis and interpretation: Elena B. Elkin, Susie H.M. Kim, David W. Kissane, Deborah Schrag

Manuscript writing: Elena B. Elkin, Ephraim S. Casper, David W. Kissane, Deborah Schrag

Final approval of manuscript: Elena B. Elkin, Susie H.M. Kim, Ephraim S. Casper, David W. Kissane, Deborah Schrag

	ACKNOWLEDGMENTS

 
We thank the research interviewers: Tara Cleary, RN; MaryEllen Coglianese, RN; Anne D'Alessandro; Mary Elizabeth Davis, RN; and Jane Maguire. We are indebted to the patients and physicians who gave generously of their time to participate in this study.

	NOTES

 
Supported by an Aging and Cancer Institutional Grant No. NCI P20-CA-103694 and Research Scholar Training Grant No. RSGT 04-012-01CPPB from the American Cancer Society (D.S.).

Presented in part at the 42nd Annual Meeting of the American Society of Clinical Oncology, June 2-6, 2006, Atlanta, GA.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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Submitted February 12, 2007; accepted August 20, 2007.

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