Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis.

AIM: Patients with advanced cancer need information about end-of-life treatment options in order to make informed decisions. Clinicians vary in the frequency with which they initiate these discussions. PATIENTS AND METHODS: As part of a long-term longitudinal study, patients with an expected 2-year survival of less than 50% who had advanced gastrointestinal or lung cancer or amyotrophic lateral sclerosis (ALS) were interviewed. Each patient's medical record was reviewed at enrollment and at 3 months for evidence of the discussion of patient wishes concerning ventilator support, artificial nutrition and hydration (ANH), resuscitation (DNR) and hospice care. A Kaplan-Meier analysis was also performed and 2-year survival calculated. RESULTS: 60 cancer and 32 ALS patients were enrolled. ALS patients were more likely than cancer patients to have evidence of discussion about their wishes for ventilator support (31% vs 0%, p<0.001), ANH (38% vs 0%, p<0.001), DNR (25% vs 0%, p<0.001) and hospice care (22% vs 5%, p = 0.03). At 6 months, 91% of ALS patients were alive compared with 62% of cancer patients; at 2 years, 63% of ALS patients were alive compared with 23% of cancer patients (p<0.001). CONCLUSIONS: Cancer patients were less likely than ALS patients to have had documented advanced care planning discussions despite worse survival. This may reflect perceptions that ALS has a more predictable course, that advanced cancer has a greater number of treatment options, or differing views about hope. Nevertheless, cancer patients may be less adequately prepared for end-of-life decision-making.

Pleuropulmonary disease due to pergolide use for restless legs syndrome.

Pergolide is an ergot-derived dopamine agonist used in Parkinson's disease and, increasingly, in restless legs syndrome. We report a patient with a 2.5-year history of weight loss, pleuropulmonary fibrosis, and exudative pleural effusion that developed insidiously while taking this medication. The extensive and invasive workup that preceded the diagnosis highlights the difficulty in attributing such a process to a drug reaction. This is the second report of such a reaction to pergolide, which is one of the increasing number of ergot-derived compounds in common clinical use.

A randomized controlled trial of direct access for laparoscopic sterilization.

OBJECTIVES: The aim of this study was to establish and evaluate a direct access service for laparoscopic sterilization. METHODS: A pragmatic randomized controlled trial was carried out on a total of 232 women referred to Aberdeen Royal Infirmary for sterilization between 1 June 1996 and 31 March 1997, from 57 general practices around Aberdeen, Scotland, comprising 75 from general practices that had received criteria for direct access, and 157 from control practices. The main outcome measures were: patients' waiting times to appointments and operation, satisfaction, short-term regret, operative complications and costs; conjoint analysis of patient preferences; GPs' adherence to referral criteria; GP and gynaecologist satisfaction; and NHS costs. RESULTS: Analysis was by intention to treat. There were no inappropriate direct referrals. Waiting time was lower in the intervention group, but there were more visits post-operatively to the GP. Patient and doctor satisfaction was equally high in both groups. There was no difference in operative complication rate, nor in total cost to patients or to the NHS. GPs and gynaecologists strongly supported direct access, but women preferred to meet both a gynaecologist and a GP before sterilization (routine referral). Other attributes of care important to patients included written information, although waiting time was not important. Of all women referred for sterilization during the study period, only 31% were suitable for direct referral. CONCLUSIONS: Patients preferred routine referral, and there were no differences in patient costs or satisfaction. There was, however, strong medical support for direct referral. Restrictive direct referral criteria may limit the uptake. These findings are important for future planning of direct referral services. Important methodological lessons were also learnt about the conduct of trials involving the primary-secondary care interface.

The accuracy of substituted judgments in patients with terminal diagnoses.

BACKGROUND: Patients' loved ones often make end-of-life treatment decisions, but the accuracy of their substituted judgments and the factors associated with accuracy are poorly understood. OBJECTIVE: To assess the accuracy of judgments made by surrogate decision makers; ascertain the beliefs, practices, and clinical and sociodemographic factors associated with accuracy of surrogates' decisions; assess the preferences of patients for life-sustaining treatments; and compare differences in accuracy across diagnoses. DESIGN: Cross-sectional paired interviews. SETTING: Outpatient practices of three university hospitals. PATIENTS: 250 patients with terminal diagnoses of congestive heart failure, AIDS, amyotrophic lateral sclerosis, lung cancer, and chronic obstructive pulmonary disease (50 patient-surrogate pairs in each group) and 50 general medical patients and their surrogates. MEASUREMENTS: The accuracy of surrogate predictions was measured by using scales based on 10 potential treatments in each of three hypothetical clinical scenarios. RESULTS: Preferences varied according to mode of treatment and scenario. On average, surrogates made correct predictions in 66% of instances. Accuracy was better for the permanent coma scenario than for the scenarios of severe dementia or coma with a small chance of recovery (P < 0.001). In a binary logit model, the accuracy of substituted judgments was positively associated with the patient having spoken with the surrogate about end-of-life issues (odds ratio [OR], 1.9 [95% CI, 1.6 to 2.3]), the patient having private insurance (OR, 1.4 [CI, 1.1 to 1.7]), the surrogate's level of education (OR, 1.5 [CI, 1.2 to 1.9]), and the patient's level of education (OR, 1.7 [CI, 1.4 to 2.2]). Accuracy was negatively associated with the patient's belief that he or she would live longer than 10 years (OR, 0.6 [CI, 0.5 to 0.7]), surrogate experience with life-sustaining treatment (OR, 0.4 [CI, 0.3 to 0.5]), surrogate participation in religious services (OR, 0.67 [CI, 0.50 to 0.91]), and a diagnosis of heart failure (OR, 0.6 [CI, 0.5 to 0.8]). Age, ethnicity, marital status, religion, and advance directives were not associated with accuracy. CONCLUSIONS: The accuracy of substituted judgments is associated with multiple clinically apparent patient and surrogate factors. This information can help clinicians identify conditions under which substituted judgments are likely to be accurate or inaccurate and can help target populations for education designed to improve the accuracy of surrogate decision making.

Ethics of allocating intensive care unit resources.

ICU clinicians commonly make decisions that allocate resources. Because of the high cost of ICU care, these practitioners can expect to be involved in the growing dilemma of trying to meet increasing demand for healthcare services within financial constraints. In order to participate meaningfully in a societal discussion over fairness in allocating scare and expensive resources, ICU practitioners should have more than a superficial knowledge of the principles of distributive justice. Distributive justice refers to fairness in the distribution of limited resources and benefits. Fairness refers to giving equal treatment to all those who are the same with regard to certain morally significant characteristics and treating in a different manner those who are not the same. Although theoretical issues remain unresolved as to which characteristics should be most significant, the United States has a strong cultural value that regards individuals as inherently valuable and having equal social worth. From this, it is likely that only an egalitarian approach to allocation of lifesaving healthcare resources will be acceptable. Studies of how ICU resources have been allocated during times of scarcity indicates that, in general, when beds are scarce, the average severity of illness of those admitted to the ICU increases. However, in some hospitals, political and economic factors appear to play important roles in determining who has access to scarce ICU beds. Of great concern is documentation of a widespread pattern in which fewer hospital resources, including ICU resources, are provided to seriously ill patients of minority status or with low levels of insurance reimbursement. How society's values get translated into allocation decisions is another unresolved issue. One recent example of how this occurred is the Oregon Medicaid Plan. This plan extended Medicaid coverage to additional people in poverty, despite the same amount of state and federal funds. This was accomplished by not reimbursing what were regarded as marginally beneficial services on the basis of medical and community input. Portents of how society might be involved in the future of health care are illustrated by the argument that society should limit access to all therapies except palliative care solely on the basis of advanced age. Until an open consensus develops in U.S. society about how to allocate scarce healthcare resources, the delivery of ICU care will continue to be at risk of covert, de facto rationing based on ability to pay, race, or other nonmedical personal characteristics.

Long-term effects of ethics education on the quality of care for patients who have do-not-resuscitate orders.

OBJECTIVE: To assess the long-term clinical impact of a broad-based ethics education program for medical houseofficers with specific emphasis on appropriate care for patients who have do-not-resuscitate (DNR) orders. DESIGN: Prospective, with an initial randomized phase. SETTING: The medical service of a university teaching hospital. PARTICIPANTS: Medical houseofficers and their inpatients. INTERVENTIONS: A pilot program in 1988, and a full program with a two-year curricular cycle from 1989 to 1991. MEASUREMENTS AND MAIN RESULTS: The authors measured compliance with specific standards of care by reviewing charts of patients who had DNR orders at baseline (n = 39, 1988), after the pilot phase (n = 57, 1989), and at the end of the first curricular cycle (n = 56, 1991), noticing who wrote the DNR order, whether the reasons for the order and appropriate consent were documented, and whether there was documented attention to any of 11 concurrent care concerns (CCCs), such as spiritual needs, the appropriateness of tube feedings or pressors, and adjustment of analgesic dose. The percentage of DNR orders written by houseofficers increased from 26% in 1988 to 67% in 1991 (p < 0.01). The percentage of charts documenting the rationale and consent for the DNR order was consistently high. The percentage of charts documenting attention to any CCC increased from 68% in 1988 to 86% in 1991 (p < 0.01). The mean number of CCCs addressed per DNA order increased from 1.34 in 1988 to 2.14 in 1991. The mean number of CCCs addressed per DNR order for patients who had AIDS increased from 0.89 in 1988 to 2.25 in 1991 (p = 0.03). CONCLUSIONS: The quality of care for patients who had DNR orders, both overall and for those who had AIDS, improved over long-term observation in the setting of an ethics education program for medical houseofficers. The results suggest that ethics education may alter physician practices and improve patient care.

More talk, less paper: predicting the accuracy of substituted judgments.

PURPOSE: To study the accuracy of substituted judgments regarding life-sustaining therapies and other therapies made by surrogate decision makers and to investigate factors associated with more accurate predictions. PATIENTS AND METHODS: A total of 50 pairs of ambulatory patients and surrogates, chosen according to a legal hierarchy, underwent separate interviews in which surrogates were asked to predict the preferences of patients for eight modes of medical therapy in three clinical scenarios, given only yes or no as response options. Patient preferences, their surrogates' predictions, and the extent of agreement between the two were measured. The total number of correct predictions constituted the Surrogate Accuracy in Matching Patient Preferences Scale (SAMPPS). Sociodemographic factors associated with agreement were also assessed. RESULTS: Agreement between patients and surrogates ranged from 57% to 81%. The mean SAMPPS score was 17 of 24 correct. Kappa (k) coefficients, which measure inter-rater concordance, were positive for 23 of 24 items and were 0.3 or greater (P < 0.05) for 14 of 24 items. Rates of agreement were not related to whether the surrogate interviewed (surrogate determined by state law) was the person the patient would have chosen as a surrogate or whether the patient had an advance directive. In multiple linear regression analysis, both prior discussions of preferences and nonchurchgoing behavior were significantly associated with patient-surrogate agreement, independent of religious denomination and race. CONCLUSION: When pressed to choose, surrogates can predict the preferences of patients for life-sustaining therapies with an imperfect accuracy that nonetheless significantly exceeds the agreement expected due to chance alone. Exhorting surrogates to give their "best estimate" and encouraging prior discussions may improve accuracy. Houses of worship might be important target sites for campaigns to improve public awareness about advance directives.