Living with a Crucial Decision: A Qualitative Study of Parental Narratives Three Years after the Loss of Their Newborn in the NICU

BACKGROUND: The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU. METHODS: The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP. FINDINGS: Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child. INTERPRETATION: Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices

Décisions d'abstention ou d'arrêt de soins intensifs en néonatologie : expertise médicale et implication des parents (Commentaire)

Kaminski Monique, Garel Micheline. Décisions d'abstention ou d'arrêt de soins intensifs en néonatologie : expertise médicale et implication des parents (Commentaire). In: Sciences sociales et santé. Volume 19, n°2, 2001. pp. 63-71

Ethically complex decisions in the neonatal intensive care unit: impact of the new French legislation on attitudes and practices of physicians and nurses.

International audienceObjectives A statute enacted in 2005 modified the legislative framework of the rights of terminally ill persons in France. Ten years after the EURONIC study, which described the self-reported practices of neonatal caregivers towards ethical decision-making, a new study was conducted to assess the impact of the new law in neonatal intensive care units (NICU) and compare the results reported by EURONIC with current practices. Setting and design The study was carried out in the same two NICU as in the EURONIC qualitative study. A third centre was added to increase the sample size. From February to October 2007, 19 physicians and 17 nurses participated in semistructured interviews very similar to those for EURONIC. Content analysis identified the recurring themes emerging from the interviews. Results Compared with the EURONIC results, the caregivers reported that they pay greater attention to the views of parents and provided respectful support to the neonates when life-sustaining treatment is withdrawn. Active termination of life has become exceptional. The possibility of withdrawal of treatment, the administration of sedatives to control pain even at the risk of hastening death, the emphasis on sparing parents the burden of decision, and the relative ignorance of the law were very similar to the EURONIC findings. Conclusion Both the medical and the legal regulation of practices has allowed more dialogue with the parents and more humane care for dying newborns. A new European study is necessary to investigate the possible changes in practices and attitudes also in other countries

Monitoring water clay content in highly-clayey soils. Calibration, temperature dependence and field use of "WCR" probes.

Measurement of the soil water content is an essential step in the understanding of the hydrodynamic behaviour of a soil. Amongst the available methods for soil moisture measurements, dielectric methods (eg WCR Campbell Scientific) are probably the most widely used nowadays. WCR CS 615 and 616 probes have been set up in the ORE Draix (SE French Alps) for _8 years to measure soil water content in soft clay shales. The continuous monitoring carried out during two years (time step measurement of 10-15 min) showed two critical points: - The water contents were highly overestimated when the manufacturer calibration equation was used - Measurements showed well-marked daily oscillations, according to soil temperature variations. This phenomenon is likely to come from the specific mineralogical characteristics of the soils. They are character- ized by high contents of clays (up to 40 % of illite / smectite). Recent work (Stangl et al, 2009) showed similar measure difficulties for clay soils and they pointed out the need to propose a specific calibration for such material. In order to improve the soil water content assessment, a laboratory calibration for CS616 WCR probes was initi- ated. The measurements were performed under controlled water content and temperature conditions. A first series of tests was carried out at saturation water content using columns filled with black marls from the Draix experi- mental site. The results were used to evaluate more properly the water content at saturation and quantify the effects of temperature on the WCR probes response. A second series of tests was performed on four types of marl from sites located in the Southern Alps (La Valette and Boulc Mondores landslides) and on a silty clay soil. These media have different characteristics in terms of weath- ering, type of clay and cation exchange capacity. The materials collected were reworked (grinding and sieving to 2 mm) to obtain material with similar structure. These tests were used to quantify the influence of the mineralogical characteristics of the materials on the WCR measurements and propose a specific calibration curve for each mate- rial. All the tests have clearly demonstrated that the temperature dependence of the sensor response was significantly greater than that announced by the manufacturer. We propose a method for correcting the effects of temperature based on the use of field recordings. This method requires that each probe WCR should be combined with a temperature sensor. The proposed technique has the ad- vantage of avoiding laboratory testing. However, correcting the effects of temperature does not remove completely the daily oscillations, and we encountered difficulties to automate the method of correction. In conclusion, we recommend to users of WCR sensors in a clayey medium to associate field measurements of water content with temperature recording, so that it is possible to correct the effects of the temperature dependence. An optimal calibration of sensors can be obtained only through laboratory tests. However, it seems possible, using some in-situ measurements, to adapt to other sites the calibration curves that we obtaine

Monitoring water clay content in highly-clayey soils. Calibration, temperature dependence and field use of "WCR" probes.

Measurement of the soil water content is an essential step in the understanding of the hydrodynamic behaviour of a soil. Amongst the available methods for soil moisture measurements, dielectric methods (eg WCR Campbell Scientific) are probably the most widely used nowadays. WCR CS 615 and 616 probes have been set up in the ORE Draix (SE French Alps) for _8 years to measure soil water content in soft clay shales. The continuous monitoring carried out during two years (time step measurement of 10-15 min) showed two critical points: - The water contents were highly overestimated when the manufacturer calibration equation was used - Measurements showed well-marked daily oscillations, according to soil temperature variations. This phenomenon is likely to come from the specific mineralogical characteristics of the soils. They are character- ized by high contents of clays (up to 40 % of illite / smectite). Recent work (Stangl et al, 2009) showed similar measure difficulties for clay soils and they pointed out the need to propose a specific calibration for such material. In order to improve the soil water content assessment, a laboratory calibration for CS616 WCR probes was initi- ated. The measurements were performed under controlled water content and temperature conditions. A first series of tests was carried out at saturation water content using columns filled with black marls from the Draix experi- mental site. The results were used to evaluate more properly the water content at saturation and quantify the effects of temperature on the WCR probes response. A second series of tests was performed on four types of marl from sites located in the Southern Alps (La Valette and Boulc Mondores landslides) and on a silty clay soil. These media have different characteristics in terms of weath- ering, type of clay and cation exchange capacity. The materials collected were reworked (grinding and sieving to 2 mm) to obtain material with similar structure. These tests were used to quantify the influence of the mineralogical characteristics of the materials on the WCR measurements and propose a specific calibration curve for each mate- rial. All the tests have clearly demonstrated that the temperature dependence of the sensor response was significantly greater than that announced by the manufacturer. We propose a method for correcting the effects of temperature based on the use of field recordings. This method requires that each probe WCR should be combined with a temperature sensor. The proposed technique has the ad- vantage of avoiding laboratory testing. However, correcting the effects of temperature does not remove completely the daily oscillations, and we encountered difficulties to automate the method of correction. In conclusion, we recommend to users of WCR sensors in a clayey medium to associate field measurements of water content with temperature recording, so that it is possible to correct the effects of the temperature dependence. An optimal calibration of sensors can be obtained only through laboratory tests. However, it seems possible, using some in-situ measurements, to adapt to other sites the calibration curves that we obtaine

Delivery room deaths of extremely preterm babies: an observational study.

Place: EnglandOBJECTIVE: Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France. DESIGN, SETTING, PATIENTS: Prospective study including neonates, who were liveborn between 22(+0) and 26(+6) weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates. Data were collected by a questionnaire completed by the professional caring for each baby. RESULTS: The study included 73 children, with a median (IQR) gestational age of 24 (23-24) weeks. Median (IQR) duration of life was 53 (20-82) min. All but one were both wrapped and warmed. Pain was assessed for 72%, although without using any scale. Gasping was described for 66%. Comfort medications were administered to 35 children (50%), significantly more frequently to babies with gasping (p=0.001). Mother-child contact was reported for 78%, and psychological support offered to parents of 92%. CONCLUSIONS: Non-pharmacological comfort care and parental support were routinely given. Comfort medication was given much more frequently than previously reported in other DRs. These data should encourage work on the indications for comfort medication and the interpretation of gasping

Patient refusal of emergency cesarean delivery - A study of obstetricians' attitudes in Europe

OBJECTIVE: To compare the attitudes of a large sample of obstetricians from eight European countries toward a competent woman's refusal to consent to an emergency cesarean delivery for acute fetal distress. METHODS: Obstetricians' attitudes in response to a hypothetical clinical case were surveyed through an anonymous, self-administered questionnaire. The sample included 1,530 obstetricians (response rate 77%) from 105 maternity units (response rate 70%) in eight countries: France, Germany, Italy, Luxembourg, Netherlands, Spain, Sweden and the United Kingdom. RESULTS: In every country, the majority of obstetricians would keep trying to persuade the woman, telling her that failure to perform cesarean delivery might result in the fetus surviving with disability, or even that her own life might be endangered. In Spain, France, Italy, and, to a lesser extent, Germany and Luxembourg, a consistent proportion of physicians would seek a court order to protect fetal welfare or avoid possible legal liability or both. In the United Kingdom, Sweden, and Netherlands, several respondents (59%, 41%, and 37%, respectively) would accept the woman's decision and assist vaginal delivery. Only a small minority (from 0 in the United Kingdom to 10% in France) would proceed with cesarean delivery without a court order. CONCLUSION: Case law arising from a few countries (United States, Canada, and the United Kingdom) and professional guidelines favoring women's autonomy have not solved the underlying ethical conflict, and in Europe acceptance of a woman's right to refuse cesarean delivery, at least in emergency situations, is not uniform. Differing attitudes between obstetricians from the eight countries may reflect diverse legal and ethical environments