Involvement In Medical Decision Research Articles

Improving Informed Consent by Implementing Shared Decisionmaking in Health Care

emplified in (draft) legal rules to emphasize patients' rights in medical treatment (Medical Contract Act) and protect human subjects in clinical trials (Medical Research with Human Beings Bill). The aim of these regulations is to give patients an active role in medical decisionmaking. Appeals to patients' rights and legal visions of informed consent alone do not adequately enable patient involvement in medical decisionmaking. Legal requirements, if regarded as merely procedural obligations, may even constitute an obstacle to doctorpatient communication.1 Rules applied when the subject is uneducated function only as an ideology.2 Empirical studies suggest that as a result of illness, patients tend to feel they must do whatever the doctor suggests, and tend to become less aggressive in seeking alternatives and passive out of a sense of powerlessness in the face of massive technical information.3 Studies have shown that relevant infor-

Striving for Balance: Palliative Care Patients’ Experiences of Making Everyday Choices

A fundamental principle of palliative care is the provision of patient-centred care, an approach explicitly based on the patient's perspective. Although much attention has been given to determining patients' preferences for involvement in medical decisions, choices related to personal and nursing care routines have been largely ignored in the literature. Data from participant observations of nurse-patient interactions involving 16 palliative care patients and their nurses as well as 10 in-depth open-ended interviews with patients were analyzed using grounded theory methods. Although the choices made by patients appeared uncomplicated on the surface, the context of unfamiliarity, uncertainty, and unpredictability in palliative care increased the underlying complexity of decision making. Through a process of deliberation and trade-offs, patients attempted to regain or maintain some balance in their lives. This process of striving for balance consisted of three overlapping phases: weighing things up, communicating choice, and living with one's choices.

The development and application of a scale of acculturation.

As Australia is one of the most multicultural societies in the world, acculturation of migrants and changes in migrants' health status should be an important focus of public health research. The absence of an accepted measure of acculturation is one barrier to exploring the relationship between acculturation and health. This paper presents data from a study of 851 Arabic-speaking adults attending 20 Arabic-speaking general practitioners in Canterbury, Sydney. An eight-item scale assessing acculturation was developed with a structural equation modelling program (LISREL). This acculturation scale was based on similar scales used with Hispanic populations, was theoretically grounded and had high internal consistency and criterion-related validity. To show the application of a scale of acculturation, patients' preferences for participation in medical decision making, according to level of acculturation, were examined. After adjustment for age, sex and highest level of formal education, significant inverse associations between acculturation and preferences for patient (versus family) involvement in medical decision making were found. Mechanisms for how acculturation affects health need to be explored.

Patient Preferences for Communication with Physicians about End-of-Life Decisions

Physicians are frequently unaware of patient preferences for end-of-life care. Identifying and exploring barriers to patient-physician communication about end-of-life issues may help guide physicians and their patients toward more effective discussions. To examine correlates and associated outcomes of patient communication and patient preferences for communication with physicians about cardiopulmonary resuscitation and prolonged mechanical ventilation. Prospective cohort study. Five tertiary care hospitals. 1832 (85%) of 2162 eligible patients completed interviews. Surveys of patient characteristics and preferences for end-of-life care; perceptions of prognosis, decision making, and quality of life; and patient preferences for communication with physicians about end-of-life decisions. Fewer than one fourth (23%) of seriously ill patients had discussed preferences for cardiopulmonary resuscitation with their physicians. Of patients who had not discussed their preferences for resuscitation, 58% were not interested in doing so. Of patients who had not discussed and did not want to discuss their preferences, 25% did not want resuscitation. In multivariable analyses, patient factors independently associated with not wanting to discuss preferences for cardiopulmonary resuscitation included being of an ethnicity other than black (adjusted odds ratio [OR], 1.48 [95% CI, 1.10 to 1.99), not having an advance directive (OR, 1.35 [CI, 1.04 to 1.76]), estimating an excellent prognosis (OR, 1.72 [CI, 1.32 to 2.59]), reporting fair to excellent quality of life (OR, 1.36 [CI, 1.05 to 1.76]), and not desiring active involvement in medical decisions (OR, 1.33 [CI, 1.07 to 1.65]). Factors independently associated with wanting to discuss preferences for resuscitation but not doing so included being black (OR, 1.53 [CI, 1.11 to 2.11]) and being younger (OR, 1.14 per 10-year interval younger [CI, 1.04 to 1.25]). Among seriously ill hospitalized adults, communication about preferences for cardiopulmonary resuscitation is uncommon. A majority of patients who have not discussed preferences for end-of-life care do not want to do so. For patients who do not want to discuss their preferences, as well as patients with an unmet need for such discussions, failure to discuss preferences for cardiopulmonary resuscitation and mechanical ventilation may result in unwanted interventions.

Admission Decisions in Emergency Department Chest Pain Patients at Low Risk for Myocardial Infarction: Patient Versus Physician Preferences

Study objective: Patient involvement in medical decisionmaking is accepted as an ethical and a legal imperative. Medical decisions are based in part on individuals' knowledge and acceptance of risk of adverse consequences. It is unclear whether actions taken to protect against low risk of poor outcome reflect patient or physician preferences. We sought to test the hypothesis that emergency department chest pain patients presented with a hypothetical situation involving a low risk of myocardial infarction are more willing than ED physicians to accept the risk associated with discharge from the hospital. Methods: We prospectively surveyed 89 ED patients with chest pain and a cohort of physicians in the ED who had been presented a hypothetical case in which the risk of AMI was quoted as 5% and the risk of death or disability if the patient was discharged was 1% and .2% if the patient was admitted. All the patients had presented to the ED with a chief complaint of chest pain; the 31 physicians, all residents, were approached at a teaching conference separate from their clinical duties. Results: Twenty-eight patients (31%), compared with 2 physicians (6%), chose discharge for the hypothetical patient with chest pain (25% difference; 95% confidence interval [CI], 6% to 41%). Forty-four patients (49%), compared with 30 physicians (97%), correctly identified the risks associated with admission and discharge (46% difference; 95% CI, 29% to 63%). Of the subjects who correctly identified the risks, 19 patients (43%) preferred discharge, compared with 1 physician (3%) (40% difference; 95% CI, 18% to 60%). Conclusion: ED patients with chest pain appear to be more likely than physicians to accept a small risk of poor outcome in a hypothetical circumstance. Many patients cannot identify the risks associated with their decision. [Davis MA, Keerbs A, Hoffman JR, Baraff LJ: Admission decisions in emergency department chest pain patients at low risk for myocardial infarction: Patient versus physician preferences. Ann Emerg Med December 1996;28:606-611.] See related editorial, Shared Decisionmaking: Easier Said Than Done

Satisfaction with ambulatory care of persons with AIDS: predictors of patient ratings of quality.

To examine the relation of patient characteristics and site of care to the perception of ambulatory care quality by persons with AIDS (PWAs). Patient surveys and medical record review were used to determine PWAs' perceptions of their ambulatory care, self-perceived health status, primary care relationships, sociodemographic characteristics, and severity of illness. A public-hospital HIV clinic, an academic group practice, and a staff-model health maintenance organization (HMO) that together care for 20% of all Massachusetts PWAs. All active patients as of February 12, 1990, and all new AIDS patients at each of the three sites during the subsequent 13 months. The primary outcome measure was a six-item scale of patient-rated quality of care (PRQC), a newly developed measure that combined patients' ratings of their physician care, nursing care, involvement in medical decisions, and overall quality of care. Multiple logistic regression was carried out with low PRQC (lowest quartile) as the dependent variable, to identify correlates of patient perceptions of poor quality. Patients who had a primary nurse were significantly less likely to have low PRQC scores (OR = 0.50, 95% CI = 0.26 to 0.97). Black patients and patients who used injection drugs were significantly more likely to rate their care in the lowest quartile (OR = 2.22, 95% CI = 1.04 to 4.78; and OR = 2.43, 95% CI = 1.13 to 5.23, respectively), as were those who had lower self-perceived health status, after controlling for confounders; no association was found by site or severity. These results show that primary nursing may be an important determinant of how PWAs rate the quality of their ambulatory care. Furthermore, PWAs who are black or who are injection drug users are less satisfied than are others with the quality of their ambulatory AIDS care.

Preferences for involvement in medical decision-making: situational and demographic influences

We examined desires to be involved in decisions about one's own medical treatment in a sample of 459 health maintenance organization members. Demographic variables (age, sex and education level) that have been found to be related to decision preferences were also tested. As predicted, respondents expressed a desire to be involved in decisions that do not require medical expertise, but had significantly lower preferences for involvement in decisions that required medical expertise. Younger and better-educated individuals reported a higher desire for involvement, but there were no sex differences in preferences. The higher desire for involvement in decisions not requiring medical knowledge was found both for groups that traditionally have wanted involvement and for those that have not. The implications of the results for patient participation in decision-making are discussed.

Dialysis patients' attitudes about cardiopulmonary resuscitation and stopping dialysis.

Dialysis patients are a unique population because of their chronic dependence on complex medical technology. Furthermore, their illness forces them to make critical decisions about medical care (mode of dialysis, renal transplantation, withdrawal from dialysis). The reasons dialysis patients discontinue therapy are not well understood, nor is it known whether they view dialysis therapy differently from other life-support interventions. We asked four groups of patients - in-center hemodialysis (HD), peritoneal dialysis (PD), renal transplant, and ambulatory elderly - questions about their wishes for (1) medical information, (2) participation in medical decision-making, (3) life-supporting therapy including cardiopulmonary resuscitation (CPR) and ventilatory support, and (4) stopping dialysis at the time of the study and in certain hypothetical situations. All groups wanted information and involvement in making medical decisions. Most patients desired CPR (96% of renal transplant, 76% of HD, 63% of PD, 82% of elderly), but PD patients chose CPR less often in all circumstances (at study, p = 0.004; in coma, p = 0.004; in permanent coma, p = 0.04), and they were less willing to undergo chronic ventilation (p = 0.001). PD patients were more likely to stop dialysis (p = 0.02) in coma than were HD patients. PD patients attended religious services more frequently and were less comfortable with machines, but these differences did not correlate with their decisions about life-support therapy. Dialysis patients have rarely considered stopping dialysis; they are similar to ambulatory elderly patients with regard to decisions about CPR and desire for involvement in medical decision-making. PD patients are a distinct subgroup worthy of further study.