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.

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.

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.

Validation of preferences for life-sustaining treatment: implications for advance care planning.

BACKGROUND: Treatment preferences established before life-threatening Illness occurs may differ from actual decisions because of changes in preferences or poor understanding of the link between prospective preferences and outcomes. OBJECTIVES: To evaluate the validity of prospective treatment preferences by examining their concordance with ratings of health states. DESIGN: Survey of seven cohorts of persons with diverse health status. Home- and hospital-based interviews were conducted at baseline and at 6, 18, and 30 months. SETTING: The greater Seattle area. PARTICIPANTS: Younger and older well adults; persons with chronic conditions, terminal cancer, or AIDS; stroke survivors; and nursing home residents. MEASUREMENTS: Concordance between six treatment preferences and five health state ratings (on a seven-point scale) was assessed by using logistic regression to measure the increase in odds of treatment refusal for each one-point change in health state rating. Preferences were considered concordant if treatments were refused in health states rated as worse than death and were accepted in health states rated as better than death. Reasons for discordance were elicited at the final interview. RESULTS: The probability of refusal of prospective treatment was strongly related to health state ratings. Odds ratios ranged from 1.7 to 1.9 (P < 0.001) for every treatment. When patients were shown their discordant preferences, they had a coherent explanation or changed their health state rating or treatment preference to make the two concordant. CONCLUSIONS: Prospective life-sustaining treatment preferences show high convergent validity. For most persons, treatment preferences are grounded in a consistent belief system. Concordance and discordance between treatment preferences and health state ratings offer clinicians the opportunity to explore patients' values and reasoning.

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.

How doctors and patients discuss routine clinical decisions. Informed decision making in the outpatient setting.

OBJECTIVE: To characterize the informed consent process in routine, primary care office practice. DESIGN: Cross-sectional, descriptive evaluation of audiotaped encounters. SETTING: Offices of primary care physicians in Portland, Oregon. PARTICIPANTS: Internists (54%) and family physicians (46%), and their patients. MEASUREMENTS AND MAIN RESULTS: Audiotapes of primary care office visits from a previous study of doctor-patient communication were coded for the number and type of clinical decisions made. The discussion between doctor and patient was scored according to six criteria for informed decision making: description of the nature of the decision, discussion of alternatives, discussion of risks and benefits, discussion of related uncertainties, assessment of the patient's understanding and elicitation of the patient's preference. Discussions leading to decisions included fewer than two of the six described elements of informed decision making (mean 1.23, median 1.0), most frequent of these was description of the nature of the decision (83% of discussion). Discussion of risks and benefits was less frequent (9%), and assessment of understanding was rare (2%). Discussions of management decisions were generally more substantive than discussions of diagnostic decisions (p = .05). CONCLUSIONS: Discussions leading to clinical decisions in these primary care settings did not fulfill the criteria considered integral to informed decision making. Physicians frequently described the nature of the decision, less frequently discussed risks and benefits, and rarely assessed the patient's understanding of the decision.

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.

Physician-assisted suicide and euthanasia in Washington State. Patient requests and physician responses.

OBJECTIVES: To estimate how often physicians receive requests for physician-assisted suicide and euthanasia and to describe a case series of patient requests for physician-assisted suicide and euthanasia, including physician responses to these requests. DESIGN: A mailed, anonymous two-part questionnaire. PARTICIPANTS: A total of 828 physicians returned questionnaires sent to 1453 potential respondents, for a response rate of 57%. Questionnaires were mailed to random sample (25%) of primary care physicians and all physicians in selected medical subspecialties in Washington State. MAIN OUTCOME MEASURES: The frequency of explicit patient requests for physician-assisted suicide and euthanasia reported by physicians and individual case descriptions of patient characteristics, physician perceptions of patient concerns, and physician responses to patient requests. RESULTS: In the past year, 12% of responding physicians received one or more explicit requests for physician-assisted suicide, and 4% received one or more requests for euthanasia. These physicians provided 207 cases descriptions. The diagnoses most often associated with requests were cancer, neurological disease, and the acquired immunodeficiency syndrome (AIDS). The patient concerns most often perceived by physicians were worries about loss of control, being a burden, being dependent on others for personal care, and loss of dignity. Physicians provided assistance more often to patients with physical symptoms. Physicians infrequently sought advice from colleagues. Of 156 patients who requested physician-assisted suicide, 38 (24%) received prescriptions, and 21 of these died as a result. Of 58 patients who requested euthanasia, 14 (24%) received parenteral medication and died. CONCLUSIONS: Patient request for physician-assisted suicide and euthanasia are not rare. As perceived by physicians, the most common patient concerns at the time these requests are made are nonphysical. Physicians occasionally provide these practices, even though they are currently illegal in Washington State. Physicians do not consult colleagues often about these requests. These findings raise the question of how to ensure quality in the evaluation of patient requests for physician-assisted death.

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.

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.

Use of the medical futility rationale in do-not-attempt-resuscitation orders.

OBJECTIVE: To describe the use of the medical futility rationale in do-not-attempt-resuscitation (DNAR) orders written for medical inpatients. DESIGN: Structured interviews with medical residents. METHODS: Second- and third-year internal medicine residents (n = 44) were telephoned weekly and briefly interviewed about each patient who received a DNAR order in the preceding week. SETTING: Two university-affiliated hospitals: a veterans affairs medical center and a municipal hospital. PATIENTS: One hundred forty-five medical inpatients for whom DNAR orders were written during their hospitalization. RESULTS: Residents stated that the medical futility rationale applied for 91 patients (63%), but this rationale was invoked independent of patient or surrogate choice for only 17 patients (12%). Of the 91 patients for whom futility applied, both quantitative futility (low probability of success) and qualitative futility (poor quality of life if cardiopulmonary resuscitation [CPR] were performed) applied to 45 (49%), quantitative futility alone to 30 (33%), and qualitative futility alone to 16 (18%). Residents report that they discussed resuscitation issues with all communicative patients for whom the medical futility rationale was invoked. Among patients for whom quantitative futility applied, residents' predictions of the probability that patients would survive to hospital discharge after CPR varied from 0% (for 60% of patients) to 75%. For 32% of these patients, residents predicted survival at 5% or more. Logistic regression modeling showed that the presence of organ failure (odds ratio [OR], 8.9; 95% confidence interval [CI], 3.3 to 23.9), the residents' estimates of the probability of surviving CPR (OR, 0.94; 95% CI, 0.88 to 0.99), and nonwhite race (OR, 2.7; 95% CI, 1.1 to 6.3) were associated with the determination of quantitative futility. In one third of the cases where qualitative futility applied, residents made the judgment of qualitative futility without discussing quality of life with communicative patients. Logistic regression modeling showed immobility (OR, 3.2; 95% CI, 1.1 to 9.0) and age > or = 75 years (OR, 0.3; 95% CI, 0.1 to 0.8) to be associated with the determination of qualitative futility. CONCLUSIONS: While residents did not appear to use the medical futility rationale to avoid discussing DNAR issues with patients, we found evidence of important misunderstandings of the concepts of both quantitative and qualitative futility. If the futility rationale is to be applied to withholding or withdrawing medical interventions, practice guidelines for its use should be developed, and education about medical futility must be incorporated into medical school, residency training, and continuing medical education programs.