Hospice patients' views on research in palliative care.

BACKGROUND: This project was conducted to investigate whether the concerns that researchers have about including terminally ill patients in research were shared by a sample of terminally ill patients. METHODS: Twenty-two patients admitted to a hospice participated in semistructured interviews; 18 patients had advanced malignant disease and 13 were women; their ages ranged from 28 to 93 years. The interview transcripts were analysed for common themes and particular attention was paid to the reasons patients gave for their views. RESULTS: All the patients wanted to participate in research. Patients advanced one or more of several reasons for participation, the commonest being altruism, enhancement of a sense of personal value, the assertion of persisting autonomy and the value they placed on a commitment by doctors to optimising care by research. They rejected the view that their consent might be non-autonomous and put forward consistent views about what they considered relevant to consent. CONCLUSIONS: Our patients did not share the concerns of ethicists about the difficulties and hazards of research with the terminally ill. These patients' views are not reflected in the professional consensus.

Experience of dying: concerns of dying patients and of carers.

BACKGROUND: Terminally ill patients frequently express concerns about what dying will be like: how their bodies may change as disease progresses, how medication may alter the effect of these changes and whether and how their preferences will be respected as they become more ill. METHODS: Thirty-six patients admitted to a hospice were interviewed and 18 carers of patients of the Palliative Care service, who had died participated in focus groups. Thirty-three patients had advanced malignant disease, 13 were women; their mean age was 68 years (range 44-92 years). RESULTS: The areas of concern consistently identified by patients were (i) privacy and autonomy, principally in regard to families, (ii) a lack of information about physical changes and medication use as death approached and (iii) the desire to shorten life, which was expressed by all patients. Carers recalled problems accessing services and support and had needed more help with practical issues such as medication timing and dose. They believed that not enough information about the patients' illnesses had been given to them and they were insistent that carers should have information against the wishes of patients. CONCLUSION: Some of the patients' and carers' concerns can be readily addressed. Others, particularly access to confidential information, cannot be addressed without a realignment of professional ethical standards and community expectations. The patients' discussions of their desire to shorten life may have implications for the debate on euthanasia and physician-assisted suicide.

The missing future tense in medical narrative.

Medical narrative is normally assumed to be a past tense narrative. Patients' and students' past tense narratives should be supplemented by future tense narratives, and in particular by what we call hypothetical narratives-narratives such as those offered by a medical student in response to the instruction "Tell me a story about when you are a doctor". These narratives are suggested to be especially useful in clinical and educational contexts because they offer greater insight into the narrator's hopes and expectations than past tense narratives, which can be helpful in planning management and teaching. The narrator's ethical principles are also exposed more clearly than when using the past tense narrative. Some ethical concerns raised by analysing narratives offered by patients or students, as if they were literary narratives, are avoided by hypothetical narratives. This suggestion is based on Ricoeur's account of the ethical importance of veracity in narrative, or "attestation of what has occurred". The patient/doctor or student/teacher relationship is found to have an implicit concern for the narrator's intention that makes the assumptions underlying literary analysis untenable.

Unobvious wounds: the suffering of hospice patients.

BACKGROUND: The suffering of palliative care patients is ordinarily thought of in terms of symptoms, and these are identified by medical terms (pain, nausea, depression). The problematic issue of relief of patients' pain meaning the same thing as the 'relief of the suffering and distress of terminally ill patients' has been raised. AIM: The aim of this study was to estimate the frequency with which medically defined suffering matched the reported suffering of our patients. METHODS: One hundred patients admitted to a hospice were asked 'In what way are you suffering?' The patients' diagnoses, their pain scores and the reasons for admission as defined by the treating clinicians were recorded. The mean age of the patients was 68 years (range 28-93 years), 92 had advanced malignant disease and 51 were women. RESULTS: Twenty-four patients were unable to state the reason for hospice admission, but none had any uncertainty in identifying the nature of their own suffering. There was a weak correlation between the patient's view of their suffering and the reason for admission. The identification of pain as the cause of suffering was weakly correlated with pain scores. Some patients with pain scores of 8-10/10 did not mention pain as a cause of suffering, and others with scores of 0/10 did identify pain as the cause of suffering. CONCLUSION: Asking hospice patients about suffering in a simple open-ended way can expose a different dimension of distress, and the views of the 100 patients of this study support the statement that relief of pain and relief of suffering are not the same.

A pilot randomized controlled trial of dexamphetamine in patients with chronic fatigue syndrome.

This study determined whether dexamphetamine improved symptoms and quality of life in patients with chronic fatigue syndrome. The setting was a specialized clinic within a tertiary referral hospital. This was a 6-week parallel-group, placebo-controlled trial with random allocation. There was a 2-week dose-adjustment phase and a 4-week stable treatment period. Outcome measures were the Fatigue Severity Scale, the Medical Outcomes Study 36-item Short-Form Health Survey, and two patient-determined outcomes. Ten patients were randomly assigned to dexamphetamine, and 10 were assigned to placebo. Fatigue Severity Scale scores improved in nine of 10 dexamphetamine and four of 10 placebo patients. The change in mean score was statistically significant. There were large but statistically nonsignificant changes in scores for the Short-Form Health Survey domains vitality and physical functioning. Dexamphetamine may be useful in the management of chronic fatigue syndrome; a larger and longer trial is justified by these results.

A new method for incorporating weighted temporal and spatial smoothing in the inverse problem of electrocardiography.

In this paper, we present a method for incorporating temporal smoothing (TS) into the estimate of epicardial potentials from body surface potential data. Our algorithm employs a different spatial smoothing parameter, chosen by the composite residual error and smoothing operator criteria, at each time step in the sequence. The total spatial smoothing term is then simply partitioned between temporal and spatial smoothing. The algorithm appears to be quite robust with regard to this partitioning. The new method was evaluated in the setting of additive Gaussian noise, but otherwise realistic conditions of body geometry and reference epicardial potentials. In examining the match between estimated and measured electrograms, or the match between estimated isopotential maps and measured isopotential maps, the estimates constructed using the new TS algorithm produced consistently smaller relative errors than those constructed using a quasi-static (QS) algorithm or those constructed by postprocessing the QS estimate with a moving average filter.

Patient-centred equipoise and the ethics of randomised controlled trials.

The ethical pre-condition of randomised controlled trials is, at present, the presence of equipoise. This refers to an opinion of the investigator that there is uncertainty as to the merits of the treatments being compared. It is argued that since the decision to enrol is the potential subject's, the investigator's opinion is not ethically relevant. It is proposed instead that equipoise be patient-centred, and that a trial is in equipoise for a patient when enrolling gives them the same chance of a good outcome as not enrolling. It is shown that trial enrolment is normally easily the best strategy for achieving a good outcome, and that trials currently thought to be unethical may be in patient-centred equipoise. This is so for three reasons: (1) patients in trials receive superior care, (2) trial enrolment minimises the risk of being a victim of a therapeutic disaster and (3) health professionals make mistakes, and a 50% chance of receiving the worse treatment until a trial reports is always better than any chance of receiving the worse treatment indefinitely. It is concluded that so long as the standard of professional conduct is the furtherance of patients' objective interests randomised controlled trials are ethical.

Characterization of silane-modified immobilized gold colloids as a substrate for surface-enhanced Raman spectroscopy.

Immobilized gold colloid particles coated with a C-18 alkylsilane layer have been characterized as a substrate for surface-enhanced Raman scattering (SERS) studies of adsorption onto hydrophobic surfaces. Atomic force microscopy images, optical extinction spectra, and SERS measurements are reported as a function of accumulation of gold colloid on glass. As the metal particles become increasingly aggregated on the surface, the SERS enhancement increases until the plasmon resonance shifts to wavelengths longer than the excitation laser. The gold colloid substrates are stable and exhibit reproducible SERS enhancement. When octadecyltrimethoxysilane is self-assembled over the gold, the metal surface is protected from exposure to solution-phase species, as evidenced by the inhibition of chemisorption of a disulfide reagent to the overcoated gold surface. The results show that interactions with gold can be blocked by a silane layer so as not to significantly influence physisorption of molecules at the C-18/solution interface. The SERS enhancement from these C-18-overcoated gold substrates is reproducible for different films prepared from the same colloidal suspension; the substrates are also stable with time and upon exposure to laser irradiation.

Parameter choice methods and temporal filtering for the generalized eigensystem method applied to the inverse problem of electrocardiography.

We have previously proposed the generalized eigensystem (GES) method as a modal expansion method for estimating electrical potentials on the heart outer surface from measurements of electrical potentials on the body surface. In this paper, we present an alternative formulation of GES more like that of classical Tikhonov regularization where a single continuous parameter needs to be chosen. We then compare this formulation of GES with zero order Tikhonov regularization on data collected from a swine experiment with the swine heart paced from six different sites. Although the inverse problems are solved at each time instant independently, we also incorporate temporal information by moving average filtering the estimates, and this is more effective for the GES methods than for Tikhonov.

Fusion of body surface potential and body surface Laplacian signals for electrocardiographic imaging.

Various approaches to the solution to the inverse problem of electrocardiography have been proposed over the years. Recently, the use of inverse algorithms using measured body surface Laplacians has been proposed, and in various studies this technique has been shown to outperform the traditional use of body surface potentials in certain model problems. In this paper, we compare the use of body surface potentials and body surface Laplacians on two model problems with different assumed cardiac sources. For the spherical cap model problems with an anterior source, the epicardial estimates using body surface potentials had smaller average relative errors than when body surface Laplacians were used. For the spherical cap model problems with a posterior source, the epicardial estimates using body surface potential or body surface Laplacian sensors generally produced similar relative errors. For the radial dipole model, the epicardial estimates using body surface Laplacians had smaller errors than when body surface potentials were used. We introduce a fusion algorithm that combines the different types of signals and generally produces a good estimate for both model problems.

The effect of a Structured Question Grid on the validity and perceived fairness of a medical long case assessment.

PROBLEM: A perception that the reliability of our oral assessments of clinical competence was vitiated by lack of consistency in questioning. DESIGN: Parallel group controlled trial of a Structured Question Grid for use in clinical assessments. The Structured Question Grid required assessors to see the patient personally in advance of the student and to write down for each case the points they wished to examine. The Structured Question Grid limited assessors to two questions on each point, one designated a pass question and one at a higher level. Three basic science and three clinical reasoning issues were required, so that a total of 12 questions was allowed. SETTING: Small (70 students/year) undergraduate medical school with an integrated, problem-based curriculum. SUBJECTS: Sixty-seven students in the fourth year of a 5-year course were assessed, each seeing one patient and being examined by a pair of assessors. Assessor pairs were allocated to use the Structured Question Grid or to assess according to their usual practice. RESULTS: After the assessment but before being informed of the result the students completed a questionnaire on their experience and gave their performance a score between 0 and 100. The questions asked were based on focus group discussions with a previous student cohort, and concerned principally the perceived fairness and subjective validity of the assessment. The assessors independently completed a similar questionnaire, gave the student's performance a score between 0 and 100, and assigned an overall pass/fail grade. CONCLUSIONS: No difference was detected between students' or assessors' views of the fairness of the assessment for assessors who had used the Structured Question Grid compared to those who had not. Students whose assessors used the Structured Question Grid considered the assessment less representative of their ability. No difference was detected in the chance of students being assessed as failing or on the likelihood of a discrepancy between students' and assessors' ratings of students as passing or failing.

The ability of a long-case assessment in one discipline to predict students' performances on long-case assessments in other disciplines.

PURPOSE: To determine whether medical students' performances in a long-case assessment in one of four disciplines (internal medicine, pediatrics, reproductive medicine, or surgery) could predict later performances in long-case assessments in the other disciplines. METHOD: In their fourth of five years at the University of Newcastle, at the end of 12-week rotations in internal medicine, pediatrics, surgery, and reproductive medicine, students undertake long-case assessments. Each long-case assessment involves a real patient and a vive voce examination, and each is scored by two assessors. The author reviewed these scores, which could range from 5 to 20, for the years 1992 to 1997. RESULTS: Over the six years, 391 students completed 1,564 cases. In 249 cases, the students scored better than 11 on their first long-case assessments; of those, 16 (6.5%) went on to fail one of the three subsequent assessments. Of the 142 students who scored 10 or less on their first assessments, 25 (17.6%) went on to fail one of the subsequent three, and 9 (6.3%) went on to fail two more assessments. Of the 24 students who scored 10 or less on the first two assessments, 9 (37.5%) went on to fail one of the next two. There were statistically significant correlations among scores in all disciplines. CONCLUSIONS: Performance in any one of the four disciplines was a good predictor of performance in any other discipline. Except for borderline students, one case was almost as good a predictor as three, and for borderline or weak students two cases were nearly as good as three.

Prediction of sleep-disordered breathing by unattended overnight oximetry.

Between January 1994 and July 1997, 793 patients suspected of having sleep-disordered breathing had unattended overnight oximetry in their homes followed by laboratory polysomnography. From the oximetry data we extracted cumulative percentage time at SaO2 < 90% (CT90) and a saturation variability index (delta Index, the sum of the differences between successive readings divided by the number of readings - 1). CT90 was weakly correlated with polysomnographic apnea/hypopnea index (AHI). (Spearman rho = 0.36, P < 0.0001) and with delta Index (rho = 0.71, P < 0.0001). delta Index was more closely correlated with AHI (rho = 0.59, P < 0.0001). In a multivariate model, only delta Index was significantly related to AHI, the relationship being AHI = 18.8 delta Index + 7.7. The 95% CI for the coefficient were 16.2, 21.4, and for the constant were 5.8, 9.7. The sensitivity of a delta Index cut-off of 0.4 for the detection of AHI > or = 15 was 88%, for detection of AHI > or = 20 was 90% and for the detection of AHI > or = 25 was 91%. The specificity of delta Index > or = 0.4 for AHI > or = 15 was 40%. In 113 further patients, oximetry was performed simultaneously with laboratory polysomnography. Under these circumstances delta Index was more closely correlated with AHI (rho = 0.74, P < 0.0001), as was CT90 (rho = 0.58, P < 0.0001). Sensitivity of delta Index > or = 0.4 for detection of AHI > or = 15 was not improved at 88%, but specificity was better at 70%. We concluded that oximetry using a saturation variability index is sensitive but nonspecific for the detection of obstructive sleep apnea, and that few false negative but a significant proportion of false positive results arise from night-to-night variability.

Quantitative SERS Measurements on Dielectric-Overcoated Silver-Island Films by Solution-Deposition Control of Surface Concentrations.

A simple method to control the dosing of small adsorbate molecules onto solid surfaces from liquid solution is applied to quantitative surface-enhanced Raman scattering measurements on dielectric-overcoated silver-island films. The deposition method, based on substrate withdrawal from solution, is evaluated by measuring fluorescence (ex situ) and optical absorption (in situ) of dye molecules deposited onto glass surfaces. Control of adsorbate surface concentrations was accomplished by varying the withdrawal rate and the concentration of the dye in solution. The dosing method was used to study the dependence of the electromagnetic contribution to SERS enhancement on surface coverage of scatterer. The sensitivity enhancement was found to be constant for adsorbate coverages up to 60-80% of a monolayer. Beyond a full monolayer, SERS enhancement for additional molecules deposited onto the surface was found to drop significantly, by as much as 1 order of magnitude.

Correlations among Epworth Sleepiness Scale scores, multiple sleep latency tests and psychological symptoms.

The aim of this study was to identify factors other than objective sleep tendency associated with scores on the Epworth Sleepiness Scale (ESS). There were 225 subjects, of whom 40% had obstructive sleep apnoea (OSA), 16% had simple snoring, and 4.9% had snoring with sleep disruption (upper airway resistance syndrome); 9.3% had narcolepsy and 7.5% had hypersomnolence without REM sleep abnormalities; 12% had chronic fatigue syndrome; 7.5% had periodic limb movement disorder and 3% had diurnal rhythm disorders. ESS, the results of overnight polysomnography and multiple sleep latency test (MSLT) and SCL-90 as a measure of psychological symptoms were recorded. The ESS score and the mean sleep latency (MSL) were correlated (Spearman rho = -0.30, P < 0.0001). The MSL was correlated with total sleep time (TST) and with sleep efficiency but not with apnoea/hypopnoea index. There was no association between the MSL and any aspect of SCL-90 scores, except a borderline significant association with the somatisation subscale. The ESS was correlated with TST but not with sleep efficiency or apnoea/hypopnoea index. The ESS was correlated with all subscales of the SCL-90 except psychoticism. An ESS > or = 10 had poor sensitivity and specificity as a predictor of MSL < 10 min or MSL < 5 min. We conclude that the MSLT and the ESS are not interchangeable. The ESS was influenced by psychological factors by which the MSL was not affected. The ESS cannot be used to demonstrate or exclude sleepiness as it is measured by MSLT.

A systematic evaluation of mechanisms in chronic cough.

We tested the hypothesis that hyperresponsiveness of the upper airway (UAHR) is present in patients with chronic cough of diverse etiology. We determined the frequency of bronchial hyperresponsiveness (BHR), hyperresponsiveness of the upper airway, sputum eosinophilia, pulmonary aspiration, and psychological symptoms in adults with chronic cough. Consecutive adults (n = 30) presenting to a tertiary referral clinic with chronic cough were compared with a group of 20 asymptomatic adults. Measurements included histamine provocation testing with measurement of flow volume curves to determine inspiratory and expiratory airflow obstruction; hypertonic saline induced sputum for analysis of eosinophils, mast cells and lipid-laden macrophages; and a validated psychological symptom questionnaire. Symptomatic rhinitis and gastroesophageal reflux were common causes of chronic cough. BHR occurred in seven patients (23%) and in no control subjects (p < 0.05). UAHR occurred in 40% of patients with cough and in four (20%) control subjects (p > 0.05). Eosinophils were present in the sputum of more patients with cough than control subjects (50% versus 19%; p < 0.05). High degrees of eosinophilia were present in six patients with cough, including three without BHR. No subject had significant lipid-laden macrophages. There was greater somatization in patients with chronic cough; ten subjects scored in the clinically significant range (p < 0.05). Abnormalities in one or more of these tests were 7.67-fold (95% CI 1.83-34.52) more likely to occur in cough patients than control subjects. We conclude that chronic cough is a nonspecific symptom that is associated with several apparently unrelated mechanisms. These include UAHR, somatization, BHR, and eosinophilic bronchitis. UAHR cannot be implicated as a single unifying mechanism. These findings emphasize the need to systematically evaluate several different causes of cough in patients who present with chronic cough.

Generalized eigensystem techniques for the inverse problem of electrocardiography applied to a realistic heart-torso geometry.

We have previously proposed two novel solutions to the inverse problem of electrocardiography, the generalized eigensystem technique (GES) and the modified generalized eigensystem technique (tGES), and have compared these techniques with other numerical techniques using both homogeneous and inhomogeneous eccentric spheres model problems. In those studies we found our generalized eigensystem approaches generally gave superior performance over both truncated singular value decomposition (SVD) and zero-order Tikhonov regularization (TIK). In this paper we extend the comparison to the case of a realistic heart-torso geometry. With this model, the GES and tGES approaches again provide smaller relative errors between the true potentials and the numerically derived potentials than the other methods studied. In addition, the isopotential maps recovered using GES and tGES appear to be more accurate than the maps recovered using either SVD and TIK.