Christine Mitchell

End-of-life care in the pediatric intensive care unit: attitudes and practices of pediatric critical care physicians and nurses.

ObjectiveTo determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DesignCross-sectional survey. SettingA random sample of clinicians at 31 pediatric hospitals in the United States. Measurements and Main Results The survey was completed by 110/130 (85%) physicians and 92/130 (71%) nurses. The statement that withholding and withdrawing life support is unethical was not endorsed by any of the physicians or nurses. More physicians (78%) than nurses (57%) agreed or strongly agreed that withholding and withdrawing are ethically the same (p < .001). Physicians were more likely than nurses to report that families are well informed about the advantages and limitations of further therapy (99% vs. 89%;p < .003); that ethical issues are discussed well within the team (92% vs. 59%;p < .0003), and that ethical issues are discussed well with the family (91% vs. 79%;p < .0002). On multivariable analyses, fewer years of practice in pediatric critical care was the only clinician characteristic associated with attitudes on end-of-life care dissimilar to the consensus positions reached by national medical and nursing organizations on these issues. There was no association between clinician characteristics such as their political or religious affiliation, practice-related variables such as the size of their intensive care unit or the presence of residents and fellows, and particular attitudes about end-of-life care. ConclusionsNearly two-thirds of pediatric critical care physicians and nurses express views on end-of-life care in strong agreement with consensus positions on these issues adopted by national professional organizations. Clinicians with fewer years of pediatric critical care practice are less likely to agree with this consensus. Compared with physicians, nurses are significantly less likely to agree that families are well informed and ethical issues are well discussed when assessing actual practice in their intensive care unit. More collaborative education and regular case review on bioethical issues are needed as part of standard practice in the intensive care unit.

End-of-life care in the pediatric intensive care unit after the forgoing of life-sustaining treatment.

ObjectiveTo describe the attitudes and practice of clinicians in providing sedation and analgesia to dying patients as life-sustaining treatment is withdrawn. Study DesignProspective case series of 53 consecutive patients who died after the withdrawal of life-sustaining treatment in the pediatric intensive care unit at three teaching hospitals in Boston. Data on the reasons why medications were given were obtained from a self-administered anonymous questionnaire completed by the critical care physician and nurse for each case. Data on what medications were given were obtained from a review of the medical record. ResultsSedatives and/or analgesics were administered to 47 (89%) patients who died after the withdrawal of life-sustaining treatment. Patients who were comatose were less likely to receive these medications. Physicians and nurses cited treatment of pain, anxiety, and air hunger as the most common reasons, and hastening death as the least common reason, for administration of these medications. Hastening death was viewed as an “acceptable, unintended side effect” of terminal care by 91% of physician-nurse matched pairs. The mean dose of sedatives and analgesics administered nearly doubled as life-support was withdrawn, and the degree of escalation in dose did not correlate with clinician’s views on hastening death. ConclusionClinicians frequently escalate the dose of sedatives or analgesics to dying patients as life-sustaining treatment is withdrawn, citing patient-centered reasons as their principle justification. Hastening death is seen as an unintended consequence of appropriate care. A large majority of physicians and nurses agreed with patient management and were satisfied with the care provided. Care of the dying patient after the forgoing of life-sustaining treatment remains underanalyzed and needs more rigorous examination by the critical care community.

The Effects of Closed-Loop Medical Devices on the Autonomy and Accountability of Persons and Systems.

Closed-loop medical devices such as brain-computer interfaces are an emerging and rapidly advancing neurotechnology. The target patients for brain-computer interfaces (BCIs) are often severely paralyzed, and thus particularly vulnerable in terms of personal autonomy, decisionmaking capacity, and agency. Here we analyze the effects of closed-loop medical devices on the autonomy and accountability of both persons (as patients or research participants) and neurotechnological closed-loop medical systems. We show that although BCIs can strengthen patient autonomy by preserving or restoring communicative abilities and/or motor control, closed-loop devices may also create challenges for moral and legal accountability. We advocate the development of a comprehensive ethical and legal framework to address the challenges of emerging closed-loop neurotechnologies like BCIs and stress the centrality of informed consent and refusal as a means to foster accountability. We propose the creation of an international neuroethics task force with members from medical neuroscience, neuroengineering, computer science, medical law, and medical ethics, as well as representatives of patient advocacy groups and the public.

Four ethical priorities for neurotechnologies and AI

Artificial intelligence and brain–computer interfaces must respect and preserve peoples privacy, identity, agency and equality, say Rafael Yuste, Sara Goering and colleagues.

DSD and Professionalism from a Multilateral View: Supplementing the Consensus Statement on the Basis of a Qualitative Survey

Treatment and support of a child with DSD calls for experience and expertise in diagnosis, surgical techniques, understanding of psychosocial issues, and recognizing and accepting the significance of individual values of children, families, and support groups. The range of what is considered “appropriate” care and treatment is still very broad and critics point at major gaps between ethical guidelines and current clinical practice. Based on a qualitative study with 27 members of multidisciplinary teams and support groups, we supplement the professional consensus statements and current ethical guidelines with 14 requirements from four different perspectives, to characterize more fully the responsible treatment and support of children and families affected by DSD. Overall, our findings highlight the importance of close collaborations between different experts and a shift from the often simplified dispute about genital surgeries to a more holistic perspective with a long-term management strategy, which should serve as a cornerstone not only for clinical practice but also for future research and evaluation studies.

Regional transfusion centre preoperative autologous blood donation programme: the first two years.

OBJECTIVE--To assess the efficacy of a regional autologous blood donation programme. DESIGN--Clinical and laboratory data were collected and stored prospectively. Transfusion data were collected retrospectively from hospital blood bank records. SETTING--Northern Region Blood Transfusion Service and 14 hospitals within the Northern Regional Health Authority. SUBJECTS--505 patients referred for autologous blood donation before elective surgery. MAIN OUTCOME MEASURES--Patient eligibility, adverse events from donation, autologous blood units provided, and autologous and allogeneic blood units transfused within 10 days of operation. RESULTS--Of 505 patients referred, 354 donated at least one unit. 78 of 151 referred patients who did not donate were excluded at the autologous clinic, mostly because of anaemia or ischaemic heart disease. In 73 cases the patient, general practitioner, or hospital consultant decided against donation. 363 autologous procedures were undertaken. In 213 (59%) cases all requested units were provided. The most common reasons for incomplete provision were late referral or anaemia. Adverse events accompanied 24 of 928 donations (2.6%). Transfusion data were obtained for 357 of the 363 procedures. 281 donors were transfused; autologous blood only was given to 225, autologous and allogeneic blood was given to 52, and allogeneic blood only was given to four. 648 of 902 (72%) units of autologous blood were transfused. Complete provision of requested autologous units was followed by allogeneic transfusion in 12 of 208 procedures (5.8%). Incomplete provision was followed by allogeneic transfusion in 44 of 149 procedures (30%). CONCLUSIONS--This study shows the feasibility of a regional autologous transfusion programme. Autologous donors only infrequently received allogeneic transfusion. Patients should be appropriately selected and referred early.

Differing Attitudes Toward Fetal Care by Pediatric and Maternal-Fetal Medicine Specialists

OBJECTIVES: The expansion of pediatric-based fetal care raises questions regarding pediatric specialists’ involvement in pregnancies when maternal conditions may affect pediatric outcomes. For several such conditions, we compared pediatric and obstetric specialists’ attitudes regarding whether and when pediatrics consultation should be offered and their views about seeking court authorization to override maternal refusal of physician recommendations. METHODS: We used a mail survey of 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) (response rate: MFM, 60.9%; FCP, 54.2%). RESULTS: FCPs were more likely than MFMs to indicate that pediatric counseling should occur before decisions regarding continuing or interrupting pregnancies complicated by maternal alcohol abuse (FCP versus MFM: 63% vs 36%), cocaine abuse (FCP versus MFM: 60% vs 32%), use of seizure medications (FCP versus MFM: 62% vs 33%), and diabetes (FCP versus MFM: 56% vs 27%) (all P < .001). For all conditions, MFMs were more than twice as likely as FCPs to think that no pediatric specialist consultation was ever necessary. FCPs were more likely to agree that seeking court interventions was appropriate for maternal refusal to enter a program to discontinue cocaine use (FCP versus MFM: 72% vs 33%), refusal of azidothymidine to prevent perinatal HIV transmission (80% vs 41%), and refusal of percutaneous transfusion for fetal anemia (62% vs 28%) (all P < .001). CONCLUSIONS: Pediatric and obstetric specialists differ considerably regarding pediatric specialists’ role in prenatal care for maternal conditions, and regarding whether to seek judicial intervention for maternal refusal of recommended treatment.

Integrity in Interprofessional Relationships

The concept of integrity is of particular importance to health professionals because it lays bare moral tensions inherent in health care which are not immediately obvious in the usual debates involving such concepts as justice, rights, utility, or the quality of life. These concepts are applied most often in an effort to discern the duties and moral obligations owed to others by health professionals. The strain and conflict which these duties cause health care workers, however, has largely gone unconsidered. Integrity, on the other hand, directs attention to the moral agency of the health professional.

Student and Faculty Reflections of the Hidden Curriculum: How Does the Hidden Curriculum Shape Students' Medical Training and Professionalization?

The hidden curriculum, or the socialization process of medical training, plays a crucial role in the development of physicians, as they navigate the clinical learning environment. The purpose of this qualitative study was to examine medical faculty and students’ perceptions of psychological, moral, and spiritual challenges during medical training in caring for critically ill patients. Focus groups were conducted with 25 Harvard Medical School (HMS) students, and interviews were conducted with 8 HMS faculty members. Five major themes emerged as important in shaping students’ medical training experiences. First, students and faculty discussed the overall significance of the hidden curriculum in terms of the hierarchy of medicine, behavioral modeling, and the value placed on research versus clinical work. Second, respondents articulated values modeled in medicine. Third, students and faculty reflected on changes in student development during their training, particularly in terms of changes in empathy and compassion. Fourth, respondents discussed challenges faced in medical school including professional clinical education and the psychosocial aspects of medical training. Finally, students and faculty articulated a number of coping mechanisms to mitigate these challenges including reflection, prayer, repression, support systems, creative outlets, exercise, and separation from one’s work. The results from this study suggest the significance of the hidden curriculum on medical students throughout their training, as they learn to navigate challenging and emotional experiences. Furthermore, these results emphasize an increased focus toward the effect of the hidden curriculum on students’ development in medical school, particularly noting the ways in which self-reflection may benefit students.

Does professional orientation predict ethical sensitivities? Attitudes of paediatric and obstetric specialists toward fetuses, pregnant women and pregnancy termination

Background To determine (1) whether fetal care paediatric (FCP) and maternal–fetal medicine (MFM) specialists harbour differing attitudes about pregnancy termination for congenital fetal conditions, their perceived responsibilities to pregnant women and fetuses, and the fetus as a patient and (2) whether self-perceived primary responsibilities to fetuses and women and views about the fetus as a patient are associated with attitudes about clinical care. Methods Mail survey of 434 MFM and FCP specialists (response rates 60.9% and 54.2%, respectively). Results MFMs were more likely than FCPs to disagree with these statements (all p values<0.005): (1) ‘the presence of a fetal abnormality is not an appropriate reason for a couple to consider pregnancy termination’ (MFM : FCP—78.4% vs 63.5%); (2) ‘the effects that a child born with disabilities might have on marital and family relationships is not an appropriate reason for a couple to consider pregnancy termination’ (MFM : FCP—80.5% vs 70.2%); and (3) ‘the cost of healthcare for the future child is not an appropriate reason for a couple to consider pregnancy termination’ (MFM : FCP—73.5% vs 55.9%). 65% MFMs versus 47% FCPs disagreed that their professional responsibility is to focus primarily on fetal well-being (p<0.01). Specialists did not differ regarding the fetus as a separate patient. Responses about self-perceived responsibility to focus on fetal well-being were associated with clinical practice attitudes. Conclusions Independent of demographic and sociopolitical characteristics, FCPs and MFMs possess divergent ethical sensitivities regarding pregnancy termination, pregnant women and fetuses, which may influence clinical care.