Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives

BACKGROUND: Past research has documented that primary care physicians and family members are often inaccurate when making substituted judgments for patients without advance directives (ADs). This study compared the accuracy of substituted judgments made by primary care physicians, hospital-based physicians, and family surrogates on behalf of elderly outpatients and examined the effectiveness of ADs in improving the accuracy of these judgments. PARTICIPANTS AND METHODS: Participants were 24 primary care physicians of 82 elderly outpatients, 17 emergency and critical care physicians who had no prior experience with the patients, and a baseline comparison group of family surrogates. The primary outcome was accuracy of physicians' predictions of patients' preferences for 4 life-sustaining treatments in 9 hypothetical illness scenarios. Physicians made substituted judgments after being provided with no patient AD, patient's value-based AD, or patient's scenario-based AD. RESULTS: Family surrogates' judgments were more accurate than physicians'. Hospital-based physicians making predictions without ADs had the lowest accuracy. Primary care physicians' accuracy was not improved by either AD. Accuracy and confidence in predictions of hospital-based physicians was significantly improved for some scenarios using a scenario-based AD. CONCLUSIONS: Although ADs do not improve the accuracy of substituted judgments for primary care physicians or family surrogates, they increase the accuracy of hospital-based physicians. Primary care physicians are withdrawing from hospital-based care in growing numbers, and emergency medicine and critical care specialists most often are involved in decisions about whether to begin life-sustaining treatments. If ADs can help these physicians better understand patients' preferences, patient autonomy more likely will be preserved when patients become incapacitated.     

Advance care planning

Advance directives allow patients to have some control over decisions even when they are no longer able to make decisions themselves. All states authorize written advance directives, such as the appointment of a health care proxy, but commonly impose procedural requirements. Some states have restricted the use of oral advance directives, although they are frequently used in everyday practice. Advance directives are limited because they are infrequently used, may not be informed, and may conflict with the patient's current best interests. Moreover, surrogates often cannot state patients' preferences accurately. Furthermore, discussions among physicians and patients about advance directives are flawed. Physicians can improve discussions about advance directives by asking the patient who should serve as proxy and by ascertaining the patient's values and general preferences before discussing specific clinical situations.     

Physicians' Views on the Importance of Patient Preferences in Surrogate Decision‐Making

OBJECTIVES: To explore the degree to which physicians report reliance on patient preferences when making medical decisions for hospitalized patients lacking decisional capacity. DESIGN: Cross‐sectional survey. SETTING: One academic and two community hospitals in a single metropolitan area. PARTICIPANTS: Two hundred eighty‐one physicians who recently cared for hospitalized adults. MEASUREMENTS: A self‐administered survey addressing physicians' beliefs about ethical principles guiding surrogate decision‐making and physicians' recent decision‐making experiences. RESULTS: Overall, 72.6% of physicians identified a standard related to patient preferences as the most important ethical standard for surrogate decision‐making (61.2% identified advanced directives and 11.4% substituted judgment). Of the 73.3% of physicians who reported recently making a surrogate decision, 81.8% reported that patient preferences were highly important in decision‐making, although only 29.4% reported that patient preference was the most important factor in the decision. Physicians were significantly more likely to base decisions on patient preferences when the patient was in the intensive care unit (odds ratio (OR)=2.92, 95% confidence interval (CI)=1.15–7.45) and less likely when the patient was older (OR=0.76 for each decade of age, 95% CI=0.58–0.99). The presence of a living will, prior discussions with the patient, and the physicians' beliefs about ethical guidelines did not significantly predict the physicians' reliance on patient preferences. CONCLUSION: Although a majority of physicians identified patient preferences as the most important general ethical guideline for surrogate decision‐making, they relied on a variety of factors when making treatment decisions for a patient lacking decisional capacity.     

Substituted judgment: how accurate are proxy predictions?

Substituted judgment has been proposed as a method of promoting the autonomy of the mentally incapacitated patient, but little is known about the accuracy of surrogate decision makers in reflecting the true wishes of patients. In this study, surrogate decision makers' views (those of primary care providers and close family members) were compared with the decisions of currently competent chronically ill elderly patients, using a hypothetic cardiopulmonary resuscitation scenario under circumstances of current health and progressive dementia. Concordance between patients and their surrogates was evaluated by assessing percent agreement, kappa coefficient (for concordance beyond chance), and directionality of discrepant responses. Most patient respondents chose to be resuscitated in both scenarios. Although patients predicted that both their physicians (90%) and family members (87%) would accurately represent their wishes, neither family members nor physicians, in fact, were able to adequately predict patients' wishes in both scenarios (kappa less than or equal to 0.3 in all scenarios; percent agreement range, 59% to 88%). Few patients had ever discussed their resuscitation preferences with either their family member (16%) or their physician (7%). These results cast doubt on the usefulness of a strict substituted judgment standard as an approach to medical decision making for patients with diminished mental capacity.     

The physician-surrogate relationship

The physician-patient relationship is a cornerstone of the medical encounter and has been analyzed extensively. But in many cases, this relationship is altered because patients are unable to make decisions for themselves. In such cases, physicians rely on surrogates, who are often asked to "speak for the patient." This view overlooks the fundamental fact that the surrogate decision maker cannot be just a passive spokesperson for the patient but is also an active agent who develops a complex relationship with the physician. Although there has been much analysis of the ethical guidelines by which surrogates should make decisions, there has been little previous analysis of the special features of the physician-surrogate relationship. Such an analysis seems crucial as the population ages and life-sustaining technologies improve, which is likely to make surrogate decision making even more common. We outline key issues affecting the physician-surrogate relationship and provide guidance for physicians who are making decisions with surrogates.     

Clinical factors that influence patients' desire for participation in decisions about illness

BACKGROUND: Clinical practice often fails to optimize patient participation in decisions about serious illness. Prior studies are unclear about whether the type of decision and prior illness experience affect the patient's preferences for participation in decision making. Most studies of patient decision making have not addressed decisions about serious illness. OBJECTIVE: To determine whether the type of illness and nature of the decision predict the patient's preferences for involvement in making decisions. DESIGN: Study of randomly selected patients' responses to vignettes about cancer, acute myocardial infarction, and diabetes coupled with cross-sectional survey and chart review. SETTING: Outpatient Veterans Affairs medical clinic. PATIENTS: A total of 255 patients with a mean age of 63.2 years (95.2% male; 61.9% married). MAIN RESULTS: Patients wanted to share hypothesized major decisions with their physicians (mean score, 2.9; 1 = only physician, 5 = only patient) but wanted less involvement in hypothesized minor decisions (mean score, 2.5). Patients with recent severe heart disease (myocardial infarction, bypass surgery, angioplasty) wanted more involvement in decisions about acute myocardial infarction than did patients with stable angina or no heart disease; prior experience with diabetes did not affect decisions about diabetes. Factor analysis of the vignette items yielded 3 types of decisions that we consider to reflect major, minor, and patient behavior decisions. Mean scores were 2.9 for major decisions, 2.1 for minor decisions, and 2.7 for patient behavior decisions. CONCLUSIONS: Patients want to share in major decisions with their physicians but prefer to be less involved in minor decisions. For some illnesses, such as myocardial infarction, prior experience with the illness increases the patients' desire for participation in decision making. Arch Intern Med. 2000;160:2991-2996     

The effect of race/ethnicity, sex, and social circumstances on coronary revascularization preferences: a vignette comparison

Disparities in cardiac care cannot be explained by clinical factors alone. We previously found that physicians' perceived nonclinical factors such as patient preferences influenced decisions for coronary revascularization. For this study, we mailed a questionnaire to a random sample of family medicine physicians, internists, cardiologists, and cardiothoracic surgeons to examine whether the patient's sex, race/ethnicity, and social circumstances impacted treatment preferences for different physician subgroups. All physicians were randomized to receive 1 of 4 questionnaires that contained a vignette describing certain hypothetical situations (desire for an active lifestyle, heavy career or family demands) for a 50-year patient who was a candidate for coronary revascularization who was 1) female, 2) male, 3) black male, or 4) white male. The response rate was 70% (544 of 777). The patient's race/ethnicity and sex did not significantly affect the physicians' treatment preferences. However, significant differences were found according to the social circumstance. More male physicians (78%) than female physicians (66%) recommended revascularization for patients with heavy family demands (P < 0.05). In logistic regression analyses, if the patient desired an active lifestyle, black and Hispanic physicians and fee-for-service physicians preferred revascularization less often than white and salaried physicians, respectively (odds ratio [OR] = 0.45 [0.21-0.94] for black/Hispanic; OR = 0.40 [0.18-0.86] for fee-for-service). Based on these results, certain social circumstances might influence treatment preferences among physician subgroups more than sex- or race-based patient factors. Research examining for causes of disparities in cardiac care should consider the effects of sociocultural issues on management decisions.     

Not all patients want to participate in decision making

BACKGROUND: The Institute of Medicine calls for physicians to engage patients in making clinical decisions, but not every patient may want the same level of participation. OBJECTIVES: 1) To assess public preferences for participation in decision making in a representative sample of the U.S. population. 2) To understand how demographic variables and health status influence people's preferences for participation in decision making. DESIGN AND PARTICIPANTS: A population-based survey of a fully representative sample of English-speaking adults was conducted in concert with the 2002 General Social Survey (N= 2,765). Respondents expressed preferences ranging from patient-directed to physician-directed styles on each of 3 aspects of decision making (seeking information, discussing options, making the final decision). Logistic regression was used to assess the relationships of demographic variables and health status to preferences. MAIN RESULTS: Nearly all respondents (96%) preferred to be offered choices and to be asked their opinions. In contrast, half of the respondents (52%) preferred to leave final decisions to their physicians and 44% preferred to rely on physicians for medical knowledge rather than seeking out information themselves. Women, more educated, and healthier people were more likely to prefer an active role in decision making. African-American and Hispanic respondents were more likely to prefer that physicians make the decisions. Preferences for an active role increased with age up to 45 years, but then declined. CONCLUSION: This population-based study demonstrates that people vary substantially in their preferences for participation in decision making. Physicians and health care organizations should not assume that patients wish to participate in clinical decision making, but must assess individual patient preferences and tailor care accordingly.     

Perceived quality of life and preferences for life-sustaining treatment in older adults

We investigated whether perceived quality of life is associated with preferences for life-sustaining treatment for older adults. Participants included chronically ill, elderly outpatients (N = 258) and their primary physicians (N = 105). Patients and physicians were independently administered a questionnaire regarding patient quality of life and preferences for cardiopulmonary resuscitation and mechanical ventilation for the patient. Physicians rated patients' global quality of life, physical comfort, mobility, depression, anxiety, and family relationships significantly worse than did patients. Nearly all perceptions of patients' quality of life were significantly associated with physicians' perceptions, but not patients' treatment preferences. Patient-physician agreement on patient global quality of life was not significantly associated with agreement regarding treatment preferences. We conclude that primary physicians generally consider their older outpatients' quality of life to be worse than do the patients. Furthermore, physicians' estimations of patient quality of life are significantly associated with physicians' attitudes toward life-sustaining treatment for the patients. For the patients, however, perceived quality of life does not appear to be associated with their preferences for life-sustaining treatment.     

Life‐Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?

OBJECTIVES: To assess whether older physicians have discussed their preferences for medical care at the end of life with their physicians, whether they have established an advance directive, and what life-sustaining treatment they wish in the event of incapacity to make these decisions for themselves. DESIGN: Mailed survey to a cohort of physicians. SETTING: Physicians who were medical students at the Johns Hopkins University in graduating classes from 1946 to 1964. PARTICIPANTS: Physicians who completed the advance directive questionnaire (mean age 68). MEASUREMENTS: Questionnaires were sent out to known surviving physicians of the Precursors Study, an on-going study that began in 1946, asking physicians about their preferences for life-sustaining treatments. RESULTS: Of 999 physicians who were sent the survey, 765 (77%) responded. Forty-six percent of the physicians felt that their own doctors were unaware of their treatment preferences or were not sure, and of these respondents, 59% had no intention of discussing their wishes with their doctors within the next year. In contrast, 89% thought their families were probably or definitely aware of their preferences. Sixty-four percent reported that they had established an advance directive. Compared with physicians without advance directives, physicians who established an advance directive were more likely to believe that their doctors (odds ratio (OR) = 3.42, 95% confidence interval (CI) = 2.49-4.69) or family members (OR = 9.58, 95% CI = 5.33-17.23) were aware of their preferences for end-of-life care and were more likely to refuse treatments than those without advance directives. CONCLUSION: This survey of physicians calls attention to the gap between preferences for medical care at the end of life and expressing wishes to others through discussion and advance directives, even among physicians.     

Preferences for autonomy when patients are physicians

OBJECTIVE: To assess physicians' preferences for patient autonomy when they are patients themselves. DESIGN: Data from practicing physicians attending a continuing medical education course were obtained by questionnaire. After adjustment for sociodemographic differences, data from the physician population were compared with similar data previously obtained from a patient population. PARTICIPANTS: One hundred fifty-one physicians (94% of the study population) agreed to participate. Ninety percent were primary care physicians. Fifty-eight percent practiced in the eastern United States. MAIN RESULTS: The physicians, like the regular patients, preferred that the principal role in decision making for their own illnesses be handled by their providers, not by themselves. As illness severity increased, physicians indicated significantly less desire for making decisions (p less than 0.01). The magnitudes of the effects of increasing illness severity upon the decision-making preferences of physician and regular patients were comparable (p = 0.53). Physician-patients, however, were slightly more interested than regular patients in making decisions (p less than 0.001). CONCLUSIONS: although physician-patients are slightly more interested than regular patients in making decisions, for the most part their preferences for autonomy resemble those of regular patients. These results suggest that medical knowledge and sociocultural factors are only minor determinants of patient attitudes towards autonomy. Rather, patients' preferences to be relieved of decision-making responsibility are better understood as part of the phenomenology of illness.     

Family Understanding of Seriously-ill Patient Preferences for Family Involvement in Healthcare Decision Making

Background  

Surrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.     

Agreement between patients and their self-selected surrogates on difficult medical decisions.

BACKGROUND--Several studies have demonstrated that surrogate decision makers often are unable to use substituted judgment when asked to make decisions for incompetent patients. This study further explored this question, using a relatively young, healthy sample of 50 patient/surrogate pairs. METHODS--Patients were randomly recruited from a community family practice clinic and asked to select a surrogate. Five case vignettes were presented to patients and surrogates during separate interviews. Vignettes asked for decisions related to ventilation, resuscitation, and tube feeding for a patient in permanent coma, amputation as life-extending treatment for a mentally confused patient, and chemotherapy for a decisionally incapacitated patient with advanced cancer. Factors considered important to decision making were also investigated. RESULTS--As groups, patients and surrogates were similar as they chose to withdraw or continue treatment in the same proportions. However, within individual pairs, agreement on treatment occurred only 70% of the time even though surrogates were asked to base their treatment decisions on substituted judgment. The kappa coefficients indicated that the rate of agreement in individual vignettes was low. Patients considered "burden on the family" and "time left to live" as the most important factors in choosing among difficult treatment options, while surrogates identified the patients' pain as the most important factor. CONCLUSIONS--The high rate of discrepant decisions underscores the importance of effective patient-surrogate communication before medical decision-making incompetence occurs. The potential of increasing patient-surrogate agreement on difficult medical decisions by educational interventions should be explored.     

The facilitated values history: helping surrogates make authentic decisions for incapacitated patients with advanced illness

Many patients who develop incapacitating illness have not expressed clear treatment preferences. Therefore, surrogate decision makers are asked to make judgments about what treatment pathway is most consistent with the patient's values. Surrogates often struggle with such decisions. The difficulty arises because answering the seemingly straightforward question, "What do you think the patient would choose?" is emotionally, cognitively, and morally complex. There is little guidance for clinicians to assist families in constructing an authentic picture of the patient's values and applying them to medical decisions, in part because current models of medical decision making treat the surrogate as the expert on the patient's values and the physician as the expert on technical medical considerations. However, many surrogates need assistance in identifying and working through the sometimes conflicting values relevant to medical decisions near the end of life. We present a framework for clinicians to help surrogates overcome the emotional, cognitive, and moral barriers to high-quality surrogate decision making for incapacitated patients.     

Estimates of future physical functioning by seriously ill hospitalized patients,their families,and their physicians

OBJECTIVES: To compare prognostic estimates made by seriously ill hospitalized patients, their surrogates, and their physicians about the patients' activities of daily living (ADLs) 2 months after admission; compare the accuracy of their estimates; and identify factors associated with the optimism and accuracy of these estimates. DESIGN: Prospective cohort study. SETTING: Five teaching hospitals. PARTICIPANTS: A subset (n = 716) of patients in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. MEASUREMENTS: Prognostic estimates of ADL function. RESULTS: Physicians were less likely than patients or surrogates to give very high or very low estimates for future functioning. Seven of ten (69.3) patients who survived 2 months estimated that they would be functionally independent at Month 2, compared with 58.5 of their surrogates and 49.2 of their physicians. Agreement on prognosis was highest between patients and surrogates (64.2) and lowest between patients and physicians (48.4). Factors significantly associated with an optimistic estimate of independent functioning were better baseline ADL function, male gender, and higher level of education. Patients were significantly more accurate than surrogates and even more so than physicians in predicting independent functioning at Month 2. Worse baseline function and higher income were significantly associated with accurate estimation. CONCLUSION: At hospital admission, seriously ill patients were more optimistic about their prognosis for physical functioning at 2 months, and more accurate in their estimates, than surrogates and physicians. Physicians tended to underestimate the prognosis for future functioning. Physicians should consider patients' and families' estimates before giving advice about treatment options and discharge planning.     

Valuing the outcomes of treatment: do patients and their caregivers agree?

BACKGROUND: Treatment outcomes are an important determinant of patients' treatment preferences. Although studies have examined how well surrogates agree with patients' preferences for specific treatment interventions, agreement regarding the valuation of health states as treatment outcomes is unknown. METHODS: Cross-sectional cohort study consisting of in-home interviews with 193 persons 60 years or older and seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers. Patients were asked whether, facing an exacerbation of illness, they would find a series of health states acceptable as a result of treatment (a rating of "unacceptable" meant they would prefer to die than to receive treatment). Caregivers were asked whether they would find these states acceptable for the patient. RESULTS: There was 80% or greater agreement for health states that were overall rated either acceptable (current health, mild memory impairment, mild pain, or other symptoms) or unacceptable (coma). There was 58% to 62% agreement (kappa = 0.10-0.25) about states with more severe physical or cognitive impairment. When disagreement occurred, caregivers were more likely to rate the state as acceptable. There was 61% to 65% agreement (kappa = 0.20-0.28) about states with severe pain or other symptoms. When disagreement occurred, caregivers and patients were equally likely to rate the state as acceptable. CONCLUSIONS: Patient-caregiver agreement about the acceptability of health states with functional or cognitive impairment, severe pain, or other symptoms was poor. Caregivers making surrogate decisions based on considerations of treatment outcomes may not effectively represent patients' preferences.     

Physicians' and spouses' predictions of elderly patients' resuscitation preferences

"Substituted judgment," in which surrogate decisionmakers approximate patients' wishes, has been recommended for decision making for mentally incapacitated patients. To test understanding of patients' preferences by potential surrogate decisionmakers, we studied primary care physicians' (n = 105) and spouses' (n = 90) predictions of elderly outpatients' (n = 258) preferences for cardiopulmonary resuscitation (CPR) and CPR plus ventilator (CPR + V), assuming three baseline health states: current health, stroke, and chronic lung disease. Although more than three-quarters of physicians and spouses surveyed believed their predictions of patients' preferences were accurate, the accuracy of physicians' and spouses' predictions did not exceed that expected due to chance alone in 5 of 6, and 3 of 6 decisions, respectively. Physicians significantly underestimated patients' preferences for resuscitation in the stroke and chronic lung disease scenarios (p less than .01), and significantly overestimated them in the current health/CPR decision (p less than .05). Spouses overestimated patients' preferences for resuscitation in all decisions, significantly so in the three CPR + V decisions (p less than .05). These results suggest physicians and spouses often do not understand elderly outpatients' resuscitation preferences. Under these circumstances they are unlikely to provide accurate substituted judgments.