Characterisation of organisational issues in paediatric clinical ethics consultation: a qualitative study.

BACKGROUND: The traditional approach to resolving ethics concerns may not address underlying organisational issues involved in the evolution of these concerns. This represents a missed opportunity to improve quality of care "upstream". The purpose of this study was to understand better which organisational issues may contribute to ethics concerns. METHODS: Directed content analysis was used to review ethics consultation notes from an academic children's hospital from 1996 to 2006 (N = 71). The analysis utilised 18 categories of organisational issues derived and modified from published quality improvement protocols. RESULTS: Organisational issues were identified in 68 of the 71 (96%) ethics consult notes across a range of patient settings and reasons for consultation. Thirteen of the 18 categories of organisational issues were identified and there was a median of two organisational issues per consult note. The most frequently identified organisational issues were informal organisational culture (eg, collective practices and approaches to situations with ethical dimensions that are not guided by policy), policies and procedures (eg, staff knows policy and/or procedural guidelines for an ethical concern but do not follow it) and communication (eg, communication about critical information, orders, or hand-offs repeatedly does not occur among services). CONCLUSIONS: Organisational issues contribute to ethical concerns that result in clinical ethics consults. Identifying and addressing organisational issues such as informal culture and communication may help decrease the recurrence of future similar ethics concerns.

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.

Relationship of general advance directive instructions to specific life-sustaining treatment preferences in patients with serious illness.

OBJECTIVE: To determine whether brief general instructions in a typical proxy-instruction advance directive (California Durable Power of Attorney for Health Care [DPAHC]) provide interpretable information about patient requests to limit life-saving treatments, and to determine whether patient treatment preferences are stable over time. DESIGN: Prospective structured interviews. SETTING: University of California, San Diego Medical Center and Veterans Affairs Medical Center, La Jolla. PATIENTS: One hundred four patients (from a randomly chosen sample of 185) with a 5-year life expectancy of no better than 50% as judged by their physicians. MAIN OUTCOME MEASURES: Patients completed the California DPAHC, a proxy-instruction advance directive, at entry and at 1 year. The patients also completed a questionnaire at entry, after 6 months, and after 1 year, indicating their preferences on a five-point Likert-format comparative rating scale for cardiopulmonary resuscitation, mechanical ventilation, artificial nutrition, and hospitalization for pneumonia. RESULTS: Sixty-eight percent of the subjects executed the DPAHC. Most patients wished treatments to be limited or withheld under certain conditions of reduced quality of life. Although general instructions noted on the DPAHC and preferences regarding specific procedures were stable over the course of a year, the advance directive's general instructions were often inconsistent with, and poor predictors of, specific procedure preferences. CONCLUSIONS: The brief general instruction component of the California DPAHC is not helpful in communicating patient wishes regarding specific life-saving procedures.

Physicians' responses to patients' requests for physician-assisted suicide.

BACKGROUND: Studies show that patient requests for physician-assisted suicide (PAS) are a relatively common clinical occurrence. The purpose of this study was to describe how experienced physicians assess and respond to requests for assisted suicide. METHODS: Focused ethnography in the offices of 11 acquired immunodeficiency syndrome physicians, 8 oncologists, and 1 hospice physician who had received requests for assisted suicide in their practice. Ten had facilitated PAS. RESULTS: Informants had a similar approach to evaluating patients who requested assisted suicide, often asking, "Why do you want to die now?" Reasons for requests fell into 3 broad categories: physical symptoms, psychological issues, and existential suffering. Physicians thought they competently addressed patients' physical symptoms, and this obviated most requests. They treated depression empirically and believed they did not assist depressed patients with assisted suicide. Physicians had difficulty addressing patients' existential suffering, which led to most facilitated requests. Informants rarely talked to colleagues about requests for assisted suicide, suggesting a "professional code of silence." CONCLUSIONS: Regardless of divergent attitudes about PAS, physicians respond similarly to requests for assisted suicide from their patients, creating a common ground for professional dialogue. Our sample addressed physical suffering aggressively, treated depression empirically, but struggled with requests arising from existential suffering. A professional code of silence regarding PAS creates professional isolation. Clinicians do not share knowledge or receive social support from peers about their decisions regarding assisted suicide. Educational strategies drawing on approaches used by experienced clinicians may create an atmosphere that enables physicians with divergent beliefs to discuss this difficult subject.

Functional status and perceived quality of life in adults with and without chronic conditions.

The objective of this study was to evaluate the association between self-reported functional status and quality of life in adults with and without chronic conditions. Data were obtained on functional status (Sickness Impact Profile, SIP), and perceived quality of life (Perceived Quality of Life Scale, PQoL) from 454 persons in nine groups with widely varying levels of functional status and disability. Multiple regression was used to analyze the association controlling for demographic characteristics (age, gender, educational level, income, marital status), self-rated health status, and depressive symptoms. PQoL was lowest for persons using wheelchairs and highest for older well adults. Scores decreased as SIP scores increased. Overall, being older, reporting better functional status, and having fewer depressive symptoms were significantly associated with higher quality of life (adjusted R(2) = 0.60). This pattern held for most subgroups, although the association was much lower for adults with AIDS and younger well adults where ceiling effects were observed in functional status. Functional status and perceived quality of life are highly associated but are distinct in many populations. Depressive symptoms and self-rated health are important mediators of the relationship to include in future studies. Amelioration of depressive symptoms through environmental modification and individual treatment are potential strategies for improving on this association in adults with chronic conditions.

Variability in physician estimates of survival for acute respiratory failure in chronic obstructive pulmonary disease.

Physician estimates of patient survival often influence clinical decisions. I studied physician estimates of survival for a patient with acute respiratory failure and underlying chronic obstructive pulmonary disease to identify the factors that may influence these estimates. Physicians (n = 205) completed the same patient management problem and estimated the length of survival for the hypothetical patient. Physician estimates of survival were quite variable, ranging from one month to five years. Shorter estimates of survival were associated with acquisition of select case information: subjective information from family members and a professional colleague, and physiologic and functional data previously demonstrated to be predictive of survival. The study suggests that estimates of survival for the same patient may vary among physicians because of different considerations of social and physiologic case information. Physician estimates of patient survival and treatment recommendations may become more uniform with additional education or decision aids regarding the prognostication of survival.

Stability of patient preferences regarding life-sustaining treatments.

Physicians often express concern about the reliability of critically ill patients' preferences regarding life-sustaining treatments. We interviewed 30 Veterans Administration intensive care unit patients to determine their preferences for resuscitation, resuscitation requiring mechanical ventilation, artificial hydration and nutrition, and hospitalization for treatment of pneumonia. Patients expressed their preferences considering their current health and then two hypothetical scenarios, stroke and dementia. Follow-up interviews occurred one month later to assess preference stability. We found a diversity of opinions about life-sustaining treatments. Despite significant changes in health status and mood (p less than 0.05), treatment preferences were stable over time (kappa = .35-.70). Our results suggest that life-sustaining treatment preferences solicited during a serious illness are reliable and may be used in decision-making when a patient becomes unable to communicate or is mentally incapacitated.

Ethical constraints on rationing medical care by age.

In a statement published in this issue, the Public Policy Committee of the American Geriatrics Society endorses the view that chronological age should not be a criterion for exclusion of individuals from medical care. This article aims to amplify the Committee's position by placing it within a broader context and identifying its justification in ethical argument. The paper is divided into three parts. The first part clarifies the difference between allocation (the distribution of funds between categories) and rationing (the distribution of funds within a single category). It is argued that given the current allocation of funds to medical care, some form of rationing is unavoidable. As others have noted, rationing is already occurring in an informal and piecemeal fashion. However, ethically sound rationing requires publicly debated and defensible policies. The second section of the paper reviews a number of arguments advanced in favor of rationing medical care on the basis of age. Objections to these arguments are carefully set out. The final part of the paper details and defends a series of positive arguments establishing special duties to the elderly. The paper concludes that to the extent that scarcity forces rationing, older persons should not be excluded because they are old.

The use of quality-of-life considerations in medical decision making.

Quality-of-life considerations in physicians' decisions on life-sustaining therapy were explored using a patient management problem (PMP) depicting acute respiratory failure in an elderly man with chronic pulmonary disease; 205 internal medicine and family medicine physicians were interviewed. The physicians' perceptions of the patient's quality of life demonstrated marked variability. Physicians considered the patient's quality of life more often to support decisions to withhold therapy than to support decisions to use mechanical ventilation (p less than 0.01). Consideration of quality of life was associated significantly with several PMP components: interpretation of the patient's prior medical experience, management of supplementary case information, attitudes about medical responsibilities/patient rights, and estimates of the patient's survival time. The authors conclude that consideration of quality of life in making life-and-death treatment decisions may involve judgments about the value of life, and that responsible consideration requires guidelines grounded in ethical principles.

Involuntary weight loss in older outpatients: incidence and clinical significance.

OBJECTIVES: To describe the incidence, anthropometric parameters, and clinical significance of weight loss in older outpatients. DESIGN: Four-year prospective cohort study. SETTING: University-affiliated Veterans Affairs Medical Center. PATIENTS: Two hundred forty-seven community-dwelling male veterans 65 years of age or older. MEASUREMENTS: Anthropometrics (weight, height, skin-folds, and circumferences), health status measures (Sickness Impact Profile scores, health care utilization, self-reported ratings of health), and bloodwork (cholesterol, albumin, others) were obtained at baseline and followed annually for 2 years. Outcome measures (hospitalization, nursing home placement, and mortality rates) were followed for a minimum of 2 years after any identified weight change. MAIN RESULTS: The mean annual percentage weight change for the study population was -0.5% (SD: +/- 4.0%; range: -17% to +25%). Four percent annual weight loss was determined to be the optimal cutpoint for defining clinically important involuntary weight loss using ROC curve analysis. The annual incidence of this degree of involuntary weight loss was 13.1%. At baseline, involuntary weight losers were similar to nonweight losers in age (73.9 +/- 7.9 vs 73.3 +/- 6.7 years), body mass index (26.8 +/- 3.9 vs 26.9 +/- 4.1 kg/m2), and all other anthropometric, health status, and laboratory measures. Relative to nonweight losers, involuntary weight losers had significantly (P < or = .05) greater decrements in central skinfold and circumference measures (subscapular skinfolds, -2.9 vs -0.4 mm; suprailiac skinfolds, -4.2 vs -0.2 mm; and waist to hip ratio, -.01 vs + .00). Both groups had significant decreases in their triceps skinfolds (an estimate of peripheral subcutaneous fat), whereas arm muscle area and albumin levels did not decline significantly in either group. Over a 2-year follow-up period, mortality rates were substantially higher (RR = 2.43; 95% CI = 1.34-4.41) among involuntary weight losers (28%) than among nonweight losers (11%). Of interest, a similar increase in 2-year mortality (36%) was also observed among subjects with voluntary weight loss (by dieting). Survival analyses adjusting for differences between weight losers and nonweight losers in baseline age, BMI, tobacco use, and other health status and laboratory measures yielded similar results. CONCLUSIONS: These results indicate that involuntary weight loss occurred frequently (13.1% annual incidence) in this population of older veteran outpatients. When involuntary weight loss occurred, the predominant anthropometric changes were decrements in measures of centrally distributed fat (trunkal skinfolds and circumferences). Finally, involuntary weight loss greater than 4% of body weight appears to be clinically important as an independent predictor of increased mortality.

Growth of the teaching nursing home. The Veterans Administration experience.

Nursing homes are becoming increasingly involved with medical education, and the Veterans Administration (VA) has been particularly active in this movement. We conducted a system-wide survey of VA nursing home facilities to determine the degree to which they participate in medical and other professional training and the features associated with such training. Of the 116 VA nursing homes in 1987, 113 (97.4%) returned completed questionnaires. Compared to "standard" VA facilities (n = 85), "teaching" nursing homes (n = 28)--those in which physicians received at least 20 hours of training per capita annually--were significantly larger, admitted and discharged significantly more patients per occupied bed, and placed a significantly larger proportion of discharged patients in noninstitutional community settings. Care costs in the teaching nursing homes were slightly but not significantly higher, despite significant increases in levels of professional staffing and amounts of training activities in all disciplines. During the survey year, teaching nursing homes provided training experiences for 440 students, residents, and fellows in internal and rehabilitation medicine, as well as for 2,700 other health professionals. The growth of teaching nursing homes in the VA system appears to be associated with positive changes in the pattern of health-care delivery, and it is increasing the number of health-care professionals trained in long-term care.

Longitudinal assessment of the nutritional status of elderly veterans.

Elderly persons are at risk for developing malnutrition due to a number of age-related factors, and conversely, malnutrition can worsen declining physiological and psychosocial conditions. The purpose of this study was to determine the nutritional status of an elderly, ambulatory outpatient population, and to evaluate change in nutritional status over a 2-year period. The 209 subjects were male veterans, over 65 years of age without acute disease-related nutritional risk factors. Nutrient intake was determined through food recalls and food frequency questionnaires. Anthropometrics included circumferences and skinfolds. Laboratory measures included selected minerals and vitamins, as well as hematological and lipid profiles. Mean intake of nutrients generally met or exceeded the Recommended Dietary Allowances with the exception of calories, although > 25% of subjects consumed inadequate amounts of thiamine, vitamin A, vitamin C, and calcium. Few subjects were found to be extremely underweight or obese, although skinfolds decreased over the two years. Mean laboratory measures were within normal range with the exception of selenium, cholesterol, and low density lipoprotein. Dietary, biochemical, and anthropometric data indicate good nutritional status in general, although dietary vitamin C, vitamin A, and calcium may be poor in subgroups; body fat as assessed by skinfolds appeared to decline; and selenium, lipid profiles, and hematological profiles warrant further investigation.

The Veterans Administration Northwest Regional Health Services Research and Development Field Program: organization, activities, and early outcomes.

In 1982, the Veterans Administration established Health Services Research field programs in each of the six VA regions. Herein, we describe the historical origins, organization, responsibilities, activities, and early accomplishments of one of these programs--the Northwest Regional HSR&D field program. Special reference is made to this program's commitment to health services research relevant to geriatrics and gerontology, including the development of a system-wide agenda for research, information syntheses in geriatrics-relevant health services research topics, and the conduct of funded projects pertinent to care of the elderly. The importance of a medical center location for the field programs is discussed, and early indications of institutional impact are described.

Measuring preferences for health states worse than death.

Previous research indicates that persons assigning values to ranges of health states consider some states to be worse than death. In a study of decisions regarding life-sustaining treatments, the authors adapted and assessed existing methods for their ability to identify and quantify preferences for health states near to or worse than death in a population of well adults and nursing home residents. The cognitive burdens involved in these decisions were also evaluated. Hypothetical health states based on six attributes of functional status were constructed to describe severe constant pain, dementia, and coma. The methods of rank order, category scaling, time tradeoff, and standard gamble were adapted to quantify states worse than death. Cognitive burden was assessed using completion rates, interviewer assessments, respondents' self-reporting, and investigators' evaluations. For both respondent groups, all methods showed similar degrees of cognitive burden for those able to complete the tasks and were similar in their ability to identify and quantify preferences. The majority of nursing home residents, however, were unable to complete or comprehend the measurement tasks. Most respondents evaluated their current health and severe constant pain as better than death; dementia and coma were more often considered equal to or worse than death. These results indicate that respondents can and do evaluate some health states as worse than death. The authors recommend systematic inclusion of states worse than death to describe a more complete range of preference values and routine assessment of the cognitive burdens of assessment techniques to evaluate methodologies.

Advance care planning: eliciting patient preferences for life-sustaining treatment.

Patient autonomy is a guiding principle in medical decision-making in America. This is challenging when patients become mentally incapacitated and cannot express their preferences. Advance care planning (ACP) addresses this challenge. ACP is a deliberative and communicative process that helps people formulate and communicate preferences for future medical care in the event of mental incapacity. Advance directives are mechanisms for communicating and/or documenting ACP, and are either instructional (e.g. statement of treatment preferences in living wills) or proxy types (e.g. appointment of another person to speak on the patient's behalf). ACP discussions between patients and health care providers and patient-orientated educational ACP materials often ignore insights from 2 related activities, health promotion and human information processing. More effective ACP should occur with greater attention to the concepts of stages of change and self-efficacy, the Health Belief Model, and the necessary requisites for cognitive integration.

Preferences for life-sustaining treatments in advance care planning and surrogate decision making.

BACKGROUND: Surrogates and clinicians often make treatment decisions for decisionally incapacitated patients with limited knowledge of their preferences. This study examined patients' life-sustaining treatment preferences to facilitate advance care planning discussions and surrogate decision making. METHODS: We interviewed 342 participants from 7 groups: younger and older well adults; persons with chronic illness, terminal cancer, and acquired immunodeficiency syndrome (AIDS); stroke survivors; and nursing home residents. Preferences for antibiotics, short- and long-term mechanical ventilation, hemodialysis, tube feeding, and cardiopulmonary resuscitation (CPR) were elicited for each participant's current health state and three hypothetical health states representing severe dementia, coma, and severe stroke. RESULTS: Participants chose to forego more invasive or long-term treatments at a higher rate than less invasive, short-term treatments in all health states. Participants were much more willing to forego treatments in coma than in their current health state, with stroke and dementia somewhere in between. Participants who were older, female, had worse functional status, had more depressive symptoms, or lived in a nursing home were more inclined to forego treatment in their current health state. In contrast, treatment preferences in hypothetical health states showed either no associations or much weaker associations with these factors. Participants who were willing to accept more invasive treatments were highly likely to accept less invasive treatments and participants who preferred to forego a less invasive treatment were highly likely to forego more invasive treatments. Participants who preferred to receive a treatment in a health state with severe impairments were highly likely to want the same treatment in a less impaired health state. Similarly, participants who preferred to forego a treatment in a less impaired health state were highly likely to forego the same treatment in a more impaired state. CONCLUSIONS: In advance care planning discussions, clinicians might explore with patients their preferences about short- and long-term treatments with variability in their invasiveness (including CPR) in both their current health state and hypothetical situations representing different levels of functional impairment. When surrogates have no knowledge about the wishes of formerly competent patients, clinicians may help them with medical decisions by discussing what other people commonly want in similar circumstances.

Provoking nonepileptic seizures: the ethics of deceptive diagnostic testing.

The use of deception in medical care is highly suspect in this country. Yet there is one condition for which deception is often used as a diagnostic tool. Nonepileptic seizures, a psychiatric condition in which emotional or psychological conflicts manifest themselves unconsciously through bodily symptoms, are currently diagnosed by a procedure called "provocative saline infusion." The test is fundamentally deceptive, requiring the physician to intentionally and directly lie to the patient, causing the patient to believe that the administered solution caused his seizures. Without such deception, the test might be useless.