Conversations About End-of-Life Decisions in Neonatology: Do Doctors and Parents Implement Shared Decision-Making?

Introduction: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International guidelines about end-of-life (EOL) MDM for neonates unify in their recommendation for shared decision-making (SDM) between doctors and parents. Yet, we do not know to what extent SDM is realized in neonatal practice. Objective: We aim at examining to which extent SDM is implemented in the NICU setting. Methods: By means of Qualitative Content Analysis, audio-recorded conversations between neonatologists and parents were analyzed. We used a framework by de Vos that was used to analyze similar conversations on the PICU. Results: In total we analyzed 17 conversations with 23 parents of 12 NICU patients. SDM was adopted only to a small extent in neonatal EOL-MDM conversations. The extent of sharing decreased considerably over the stages of SDM. The neonatologists suggested finding a decision together with parents, while at the same time seeking parents' agreement for the intended decision to forgo life-sustaining treatment. Conclusions: Since SDM was only realized to a small extent in the NICU under study, we propose evaluating how parents in this unit experience the EOL-MDM process and whether they feel their involvement in the process acceptable and beneficial. If parents evaluate their involvement in the current approach beneficial, the need for implementation of SDM to the full extent, as suggested in the guidelines, may need to be critically re-assessed.

Standardized Outcome Measures for Preterm and Hospitalized Neonates: An ICHOM Standard Set.

INTRODUCTION: Approximately, one in ten infants is born preterm or requires hospitalization at birth. These complications at birth have long-term consequences that can extend into childhood and adulthood. Timely detection of developmental delay through surveillance could enable tailored support for these babies and their families. However, the possibilities for follow-up are limited, especially in middle- and low-income countries, and the tools to do so are either not available or too expensive. A standardized and core set of outcomes for neonates, with feasible tools for evaluation and follow-up, could result in improving quality, enhance shared decision-making, and enable global benchmarking. METHODS: The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group, which was comprised of 14 health-care professionals (HCP) and 6 patient representatives in the field of neonatal care. An outcome set was developed using a three-round modified Delphi process, and it was endorsed through a patient representative-validation survey and an HCP survey. RESULTS: A literature review revealed 1,076 articles and 26 registries which were screened for meaningful outcomes, patient-reported outcome measures, clinical measures, and case mix variables. This resulted in a neonatal set with 21 core outcomes covering three domains (physical, social, and mental functioning) and 14 tools to assess these outcomes at three timepoints. DISCUSSION: This set can be implemented globally and it will allow comparison of outcomes across different settings and countries. The transparent consensus-driven development process which involved stakeholders and professionals from all over the world ensures global relevance.

"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making.

BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. METHODS: We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. RESULTS: The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. DISCUSSION: Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. CONCLUSION: SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.

Health professionals' attitudes toward religiosity and spirituality: a NERSH Data Pool based on 23 surveys from six continents.

Background In order to facilitate better international and cross-cultural comparisons of health professionals (HPs) attitudes towards Religiosity and/or Spirituality (R/S) we updated the NERSH Data Pool. Methods We performed both a network search, a citation search and systematic literature searches to find new surveys. Results We found six new surveys (N=1,068), and the complete data pool ended up comprising 7,323 observations, including 4,070 females and 3,253 males. Most physicians (83%, N=3,700) believed that R/S had "some" influence on their patients' health (CI95%) (81.8%-84.2%). Similarly, nurses (94%, N=1,020) shared such a belief (92.5%-95.5%). Across all samples 649 (16%; 14.9%-17.1%) physicians reported to have undergone formal R/S-training, compared with nurses where this was 264 (23%; 20.6%-25.4%). Conclusions Preliminary analysis indicates that HPs believe R/S to be important for patient health but lack formal R/S-training. Findings are discussed. We find the data pool suitable as a base for future cross-cultural comparisons using individual participant data meta-analysis.

Physicians' religious/spiritual characteristics and their behavior regarding religiosity and spirituality in clinical practice: A meta-analysis of individual participant data.

BACKGROUND: Religiosity and/or spirituality (R/S) of physicians have been reported to inform behavior regarding religiosity and spirituality in clinical practice (R/S-B). Our aim was to study this association. METHODS: Building upon a large international data pool of physician values we performed network and systematic literature searches using Google Scholar, Web of Science, Embase, Medline, and PsycInfo. Measures for R/S and R/S-B were selected for comparability with existing research. We performed a two-stage IPDMA using R/S coefficients from sample-wise multiple regression analyses as summary measures. We controlled for age, gender, and medical specialty. An additional sub-analysis compared psychiatrists to non-psychiatrists. RESULTS: We found 11 eligible surveys from 8 countries (n = 3159). We found a positive association between R/S and R/S-B with an overall R/S coefficient of 0.65 (0.48-0.83). All samples revealed a positive association between R/S and R/S-B. Only 2 out of the 11 samples differed from the overall confidence interval. Psychiatrists had a higher degree of R/S-B, but associations with R/S did not differ compared to non-psychiatrists. CONCLUSIONS: We confirmed a significant association between R/S and R/S-B in this study. Despite large cultural differences between samples, coefficients remained almost constant when controlling for confounders, indicating a cultural independent effect of R/S on R/S-B, which to our knowledge has not been documented before.Such interaction can constitute both facilitators and barriers for high quality health care and should be considered in all aspects of patient and relationship-centered medicine.

The International NERSH Data Pool of Health Professionals' Attitudes Toward Religiosity and Spirituality in 12 Countries.

The amount of research concerned with the values of health professionals (HPs) is steadily growing. Around the world HPs face similar challenges when patients express their existential and spiritual views. How HPs engage these views, and the degree of embedment into consultations, differ across cultures. Today, more than ever before, researchers in this field need to share experiences and build new knowledge upon local findings. To meet this demand, we founded the international collaboration "Network for Research on Spirituality and Health" ( https://NERSH.org ). One of the central projects of our network has been to build a large international data pool of health professionals' attitudes toward religiosity and spirituality. Today the data pool hosts answers from more than 6,000 health professionals from 17 separate surveys derived from 12 countries. Data were gathered by either the questionnaire "Religion and Spirituality in Medicine, Perspectives of Physicians" (RSMPP) or its successor 'NERSH Questionnaire'. In this article we describe the methodology behind the construction of the data pool. We also present an overview of five available scales related to HP religiosity and spirituality, including a description of scale reliability and dimensionality.

Religious Values in Clinical Practice are Here to Stay.

Research to date has shown that health professionals often practice according to personal values, including values based on faith, and that these values impact medicine in multiple ways. While some influence of personal values are inevitable, awareness of values is important so as to sustain beneficial practice without conflicting with the values of the patient. Detecting when own personal values, whether based on a theistic or atheistic worldview, are at work, is a daily challenge in clinical practice. Simultaneously ethical guidelines of tone-setting medical associations like American Medical Association, the British General Medical Council and Australian Medical Association have been updated to encompass physicians' right to practice medicine in accord with deeply held beliefs. Framed by this context, we discuss the concept of value-neutrality and value-based medical practice of physicians from both a cultural and ethical perspective, and reach the conclusion that the concept of a completely value-neutral physician, free from influence of personal values and filtering out value-laden information when talking to patients, is simply an unrealistic ideal in light of existing evidence. Still we have no reason to suspect that personal values, whether religious, spiritual, atheistic or agnostic, should hinder physicians from delivering professional and patient-centered care.

Religious values of physicians affect their clinical practice: A meta-analysis of individual participant data from 7 countries.

BACKGROUND: Observational studies indicate that religious values of physicians influence clinical practice. The aim of this study was to test prior hypotheses of prevalence of this influence using a meta-analysis design. METHODS: Based on a systematic literature search we performed individual participant data meta-analysis (IPDMA) on data based on 2 preselected questionnaires. Ten samples from 7 countries remained after exclusion (n = 3342). IPDMA was performed using a random-effects model with 2 summary measures: the mean value of the scale "Religiosity of Health Professionals"; and a dichotomized value of the question "My religious beliefs influence my practice of medicine." Also, a sensitivity analysis was performed using a mixed-models design controlling for confounders. RESULTS: Mean score of religiosity (95% confidence interval [CI]) was significantly lower in the European subgroup (8.46 [6.96-9.96]) compared with the Asian samples India (10.46 [9.82-10.21]) and Indonesia (12.52 [12.19-12.84]), whereas Brazil (9.76 [9.54-9.99]) and USA (10.02 [9.82-10.21]) were placed in between. The proportion of the European physicians who agreed to the statement "My religious beliefs influence my practice of medicine" (95% CI) was 42% (26%-59%) compared with Brazil (36% [29%-43%]), USA (57% [54%-60%]), India (58% [52%-63%]), and Indonesia (91% [84%-95%]). CONCLUSIONS: Although large cross-cultural variations existed in the samples, 50% of physicians reported to be influenced by their religious beliefs. Religiosity and influence of religious beliefs were most pronounced in India, Indonesia, and a European faith-based hospital. Education regimes of current and future physicians should encompass this influence, and help physicians learn how their personal values influence their clinical practice.

Conventional and laparoscopic reversal of the Hartmann procedure: a review of literature.

PURPOSE: The aim of this study was to provide a systematic overview on both laparoscopic and conventional Hartmann reversal. Furthermore, the Hartmann procedure is reevaluated in the light of new emerging alternatives. METHODS: Medline, Ovid, EMBASE, and Cochrane database were searched for studies reporting on outcomes after Hartmann reversal. RESULTS: Thirty-five studies were included in this review of which 30 were retrospective. A total of 6,249 patients with a mean age of 60 years underwent Hartmann reversal. Two thirds of patients were classified as American Society of Anesthesiologists (ASA) I-II. The mean reversal rate after a Hartmann procedure was 44%, and mean time interval between Hartmann procedure and Hartmann reversal was 7.5 months. The most frequent reported reasons for renouncing Hartmann reversal were high ASA classification and patients' refusal. The overall morbidity rate ranged from 3% to 50% (mean 16.3%) and mortality rate from 0% to 7.1% (mean 1%). Patients treated laparoscopically had a shorter hospital stay (6.9 vs. 10.7 days) and appeared to have lower mean morbidity rates compared to conventional surgery (12.2% vs. 20.3%). CONCLUSION: Hartmann reversal carries a high risk on perioperative morbidity and mortality. The mean reversal rate is considerably low (44%). Laparoscopic reversal compares favorably to conventional; however, high level evidence is needed to determine whether it is superior.

The effect of aprotinin, tranexamic acid, and aminocaproic acid on blood loss and use of blood products in major pediatric surgery: a meta-analysis.

OBJECTIVE: Aprotinin reduces the blood loss and transfusion of blood products in children undergoing major surgery. Aprotinin has been associated with severe side effects in adults, and tranexamic acid and aminocaproic acid have been found to be safer alternatives in adults. This systematic review addresses the question of whether tranexamic acid and aminocaproic acid are equally effective as aprotinin for reducing blood loss and transfusion in children undergoing major surgery. DATA SOURCES: A systematic review of the literature was conducted to identify all randomized controlled trials of aprotinin, tranexamic acid, and aminocaproic acid involving children undergoing cardiac or scoliosis surgery. STUDY SELECTION AND DATA EXTRACTION: Twenty-three cardiac studies, totaling 1893 patients, met the inclusion criteria. None of the studies directly compared aprotinin to an alternative antifibrinolytic. Five scoliosis studies, totaling 207 patients, met the inclusion criteria. Data on blood loss and use of blood products in the first 24 postoperative hours were extracted. Only homogenously distributed outcomes were pooled. DATA SYNTHESIS: Tranexamic acid showed a homogeneously distributed reduction of blood loss by 11 mL/kg (95% confidence interval [CI] 9-13 mL/kg). Outcomes of blood loss reduction by aprotinin and aminocaproic acid were too heterogeneously distributed to be pooled, so the effect on blood loss could not be evaluated. Both aprotinin and tranexamic acid significantly reduced packed red cell transfusion (4 mL/kg, 95% CI 2-7 mL/kg and 7 mL/kg, 95% CI 5-10 mL/kg, respectively). Type of antifibrinolytic was not a determining factor that explained differences in outcome among trials in a meta-regression analysis. In the scoliosis studies, aprotinin and tranexamic acid significantly reduced blood loss compared with placebo (385 mL, 95% CI 727-42 mL and 682 mL, 95% CI 1149-214 mL, respectively). CONCLUSIONS: There is no evidence that suggests that, compared with aprotinin, alternative antifibrinolytics such as tranexamic acid were less effective in reducing blood loss in major pediatric surgery.