Good practice in consent

Informed parental consent reminds the health professional to respect parent autonomy with respect to their infant's health care. It involves at least four elements: information, assessment of understanding, assessment of capacity, and freedom to choose. Critical issues are training of staff, timing of approach, and quality and presentation of information. In the newborn period, additional problems include parental distress and competence, consent for research into emergency treatments (exceptions to this are proposed below); screening for future disease, circumcision and withdrawing intensive care are considered as special cases. Variation in practice and policies in European neonatal units is described.     

Ulysses directives in The Netherlands: opinions of psychiatrists and clients

In this article we present a study on the opinions of Dutch psychiatrists and clients on Ulysses directives. In-depth interviews were conducted with 18 clients and 17 psychiatrists. Most respondents were proponents of Ulysses directives. The most frequently mentioned objective of these directives was to secure timely admission to hospital, although a large minority was mainly interested in giving patients influence on treatment decisions. Psychiatrists differed on how much autonomy they preferred with regard to decisions about the moment of admission and kind of treatment. Clients also differed in this respect. Pressure from others to execute a Ulysses directive, and premature admission to the hospital were mentioned as risks of Ulysses directives. Crisis cards were seen as an alternative by many psychiatrists and some clients. Recommendations are made for a good functioning of Ulysses directives, and the appropriateness of crisis cards as an alternative for a number of patients is discussed.     

Reflections on ethical concerns arising from the incorporation of results of randomized trials of antineoplastic therapy into routine clinical practice

There has been little discussion in the medical literature regarding the process whereby physicians elect to accept or reject the incorporation of results of randomized trials into their routine clinical practice. This decision-making process has the potential to result in serious ethical dilemmas.     

Quadriceps strength in intensive care unit survivors: Variability and influence of preadmission physical activity

BackgroundMuscle weakness is common in patients who survive a stay in the intensive care unit (ICU). Quadriceps strength (QS) measurement allows evaluation of lower limb performances that are associated with mobility outcomes.ObjectivesThe objective of the study was to characterise the range of QS in ICU survivors (ICUS) during their short-term evolution, by comparing them with surgical patients without critical illness and with healthy participants. The secondary aim was to explore whether physical activity before ICU admission influenced QS during that trajectory.MethodsPatients with length of ICU stay ≥2 days, adults scheduled for elective colorectal surgery, and young healthy volunteers were included. Maximal isometric QS was assessed using a handheld dynamometer and a previously validated standardised protocol. The dominant leg was tested in the supine position. ICUSs were tested in the ICU and 1 month after ICU discharge, while surgical patients were tested before and on the day after surgery, as well as 1 month after discharge. Healthy patients were tested once only. Patients were classified as physically inactive or active before admission from the self-report.ResultsThirty-eight, 32, and 34 participants were included in the ICU, surgical, and healthy groups, respectively. Demographic data were similar in the ICUS and surgical groups. In the ICU, QS was lower in the ICU group than in the surgical and healthy groups (3.01 [1.88–3.48], 3.38 [2.84–4.37], and 5.5 [4.75–6.05] N/kg, respectively). QS did not significantly improve 1 month after ICU discharge, excepted in survivors who were previously physically active (22/38, 56%): the difference between the two time points was ?6.6 [?27.1 to ?1.7]% vs 20.4 [?3.4 to 43.3]%, respectively, in physically inactive and active patients (p = 0.002).ConclusionsPatients who survived an ICU stay were weaker than surgical patients. However, a huge QS heterogeneity was observed among them. Their QS did not improve during the month after ICU discharge. Physically inactive patients should be early identified as at risk of poorer recovery.     

The implications of autonomy: Viewed in the light of efforts to uphold patients dignity and integrity

This article focuses on Danish patients’ experience of autonomy and its interplay with dignity and integrity in their meeting with health professionals. The aim is to chart the meanings and implications of autonomy for persons whose illness places them in a vulnerable life situation. The interplay between autonomy and personal dignity in the meeting with health care staff are central concepts in the framework. Data collection and findings are based on eight qualitative semi-structured interviews with patients. Patients with acute, chronic, and life threatening diseases were represented including surgical as well as medical patients. The values associated with autonomy are in many ways vitalising, but may become so dominant, autonomy seeking, and pervasive that the patient''s dignity is affected. Three types of patient behaviour were identified. (1) The proactive patient: Patients feel that they assume responsibility for their own situation, but it may be a responsibility that they find hard to bear. (2) The rejected patient: proactive patients take responsibility on many occasions but very active patients are at risk of being rejected with consequences for their dignity. (3) The knowledgeable patient: when patients are health care professionals, the patient''s right of self-determination was managed in a variety of ways, sometimes the patient''s right of autonomy was treated in a dignified way but the opposite was also evident. In one way, patients are active and willing to take responsibility for themselves, and at the same time they are “forced” to do so by health care staff. Patients would like health professionals to be more attentive and proactive.     

Experiences of ethical dilemmas in rehabilitation: Swedish occupational therapists’ perspectives

The aim of this study was to describe Swedish occupational therapists’ experiences of encountering ethical dilemmas in rehabilitation and strategies they used to handle the situations. Twelve occupational therapists who work with adults with developmental disabilities were interviewed using a semi-structured interview design. Data were analysed using qualitative content analysis. The results showed that ethical dilemmas were common in the occupational therapists’ daily work within rehabilitation. Many situations that created ethical dilemmas were related to occupational therapists who worked with clients and their relatives, and other healthcare providers. The results showed further that occupational therapists found it difficult to make decisions and to optimize clients’ participation in decision-making, to set limits and act professionally, and to best handle the situation for the client and avoid ethical dilemmas. This study indicates the importance of illustrating experiences of ethical dilemmas within occupational therapy praxis and the meaning of discussing ethical dilemmas with different healthcare providers to reach a divided view of the client in order to develop successful and healthy strategies that will optimize the rehabilitation of clients with developmental disabilities.     

The impact of the Bristol Royal Infirmary disaster and inquiry on public services in the UK

The inquiry into the services provided by the paediatric cardiac surgical team at Bristol Royal Infirmary between 1984 and 1995 marks a watershed in the development of health and social care services in the UK. There was an organisational failure of foresight based on a series of systemic and communication failures which contributed to oversight of an 'incubating' hazard which ultimately led to disaster. The recommendations of the Bristol inquiry have provided a major stimulus to the modernisation programme and especially of governance in health and social care which aims to restore public confidence and create 'high-trust' organisations. While it is premature to evaluate the impact of the changes, there is little evidence at present to indicate that they will improve the quality of professional decision making and the safety of users or enhance user and public confidence in the NHS and other public services.     

Insight into illness, neurocognition and quality of life in schizophrenia

Objective

The aim of this study was to assess the impact of insight into illness on self-reported quality of life (QoL) for patients with schizophrenia.

Methods

This cross-sectional study was conducted in the psychiatric department of a French public university teaching hospital. The data collected included socio-demographic information, clinical characteristics, medications, cognitive performance assessments, insight into illness, and the S-QoL 18. A multivariate analysis using multiple linear regressions was performed to determine variables potentially associated with QoL levels.

Results

One hundred and thirteen outpatients with stable schizophrenia were enrolled in our study.Significant associations were found between QoL and socio-demographic characteristics: a higher QoL was associated with marital status (in couple) and employment. Concerning insight into illness, lower QoL levels were associated with better awareness of the mental disorder, whereas higher QoL levels were associated with better awareness of positive and negative symptoms. Elementary neuropsychological measures were not statistically associated with QoL.

Conclusion

Insight into illness, marital status and employment were the most important features associated with QoL, whereas there was no evidence that elementary neurocognition directly influenced QoL. The different facets of insight into illness should be considered to guide the development of specific interventions intended to improve QoL. Moreover, this study highlights the need for clinicians to pay more attention to the personal impact of schizophrenia, especially upon family life and work.