palliative care; ethics; clinical ethics; teamwork; health care ethics
Description
Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Allocation of Health Care Resources; Clinical Ethics; End-of-life; Ethics; Quality/Value of Life/Personhood
Description
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed. METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making. RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment. CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Pediatric palliative care; clinical ethics; continuity of care; quality of care
Description
AIM: To explore and compare acute and long-term care professionals' perspectives about pediatric palliative care. METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams. RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgments about their patients' quality of life by acute care teams during health events. Personalized care, communication with families and continuity of care were thought to be key elements to improve care. CONCLUSION: Pediatric palliative care is well recognized throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction. This article is protected by copyright. All rights reserved.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
clinical ethics; continuity of care; paediatric palliative care; quality of care
Description
AIM: To explore and compare acute and long-term care professionals' perspectives about paediatric palliative care. METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams. RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgements about their patients' quality of life by acute care teams during health events. Personalised care, communication with families and continuity of care were thought to be key elements to improve care. CONCLUSION: Paediatric palliative care is well recognised throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Palliative Care; Pediatrics; Communication; Charting the Territory; Neoplasms; Best Practices (Davies); truth telling; clinical ethics; cultural factors; hepatoblastoma; Professional Ethics; Sociocultural Factors; Truth
Description
Communication with children who have life-threatening illnesses is a major challenge. Communication practices are greatly influenced by factors such as the child’s age, the parents’ wishes, and the cultural norms. This article presents the case of a 12-year-old Japanese boy with advanced hepatoblastoma. The patient also was diagnosed with Asperger’s syndrome, which impairs interpersonal communication. The case is discussed from the perspective of clinical ethics, especially with regard to truth telling. The health care team faced an ethical dilemma because of the complications involved. Physicians treating children with cancer should be aware of these issues to be able to effectively communicate with their patients. (PsycINFO Database Record (c) 2011 APA, all rights reserved) (journal abstract)
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Pediatric Ethics And Communication Excellence (peace) Rounds: Decreasing Moral Distress And Patient Length Of Stay In The Picu
Creator
Lucia Wocial; Veda Ackerman; Brian Leland; Brian Benneyworth; Vinit Patel; Yan Tong; Mara Nitu
Identifier
doi:10.1007/s10730-016-9313-0
Publisher
Hec Forum
Date
2016
Subject
Health Care Delivery; Morality; Pediatrics; Intensive Care; Communication; Ethics Medical; Health Care Industry; Studies; Patient
Moral Distress; Ethics Intervention; Icu Length Of Stay; Clinical Ethics; Pediatrics
Description
This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Ethical Considerations In Perinatal Palliative Care
Creator
Mendes Joana; Wool Jesse; Wool Charlotte
Identifier
10.1016/j.jogn.2017.01.011
Publisher
Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
Date
2017
Subject
Clinical Ethics; Organ Donation; Perinatal Bereavement; Perinatal Palliative Care; Shared Decision Making
Description
Clinicians may face new ethical considerations when parents continue pregnancies after receiving life-limiting fetal diagnoses and desire palliative care. In this article we present four ethical considerations in perinatal palliative care: ambiguous terminology in relation to diagnosis or prognosis, differences between bereavement support and palliative care, neonatal organ donation, and postdeath cooling. In this article, we enable readers to consider current topics from different perspectives and reflect on care when confronted with sensitive clinical scenarios.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be "constrained" in their actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
]]>https://pedpalascnetlibrary.omeka.net/items/show/10523
Objective To describe the opinions of paediatricians who teach resuscitation in Brazil regarding resuscitation practices in the delivery room (DR) of preterm infants with gestational ages of 23–26 weeks.
Methods Cross-sectional study with an internationally validated electronic questionnaire (December 2011–September 2013) sent to the instructors of the Neonatal Resuscitation Program of the Brazilian Society of Paediatrics on parental counselling practices, medical limits for resuscitation of extremely preterm infants and medical considerations for decision-making in this group of infants. The analysis was descriptive.
Results Among 685 instructors, 560 (82%) agreed to participate. Only 5%–13% reported having opportunity for antenatal counselling parents: if called, 22% reported discussing with the family about the possibility not to resuscitate in the DR; 63% about the possibility of death in the DR and 89% about the possibility of death in the neonatal unit. If the parents did not agree with the advice of the paediatrician, 30%–50% of the respondents would follow the procedures they advised regardless of the opinion of the parents. The higher the gestational age, the lower is the percentage of paediatricians who believed that parents should participate in decision-making. Only 9% participants reported the existence of written guidelines at their hospital on initiation of resuscitation in the DR at limits of viability, but 80% paediatricians reported using some criteria for limiting resuscitation in the DR.
Conclusion The picture obtained in this study of Brazilian paediatricians indicates that resuscitation of extremely preterm infants is permeated by ambivalence and contradictions.]]>2023-02-23T17:20:38-05:00
Title
Opinions Of Paediatricians Who Teach Neonatal Resuscitation About Resuscitation Practices On Extremely Preterm Infants In The Delivery Room.
Creator
Ruth Guinsburg
Identifier
doi:10.1136/medethics-2015-103173
Publisher
Journal Of Medical Ethics
Date
2016
Subject
Management; Viability; Decision Making; Attitudes; Born; Ethics; Social Issues; Health; Social Sciences; Biomedical; Obstetricians; Ethics Medical; Care And Treatment; Ethical Aspects; Practice Guidelines (medicine); Cpr (first Aid); Methods; Infant
Clinical Ethics; Decision-making; End Of Life; Neonatology; Perinatal Mortality
Description
Abstract
Objective To describe the opinions of paediatricians who teach resuscitation in Brazil regarding resuscitation practices in the delivery room (DR) of preterm infants with gestational ages of 23–26 weeks.
Methods Cross-sectional study with an internationally validated electronic questionnaire (December 2011–September 2013) sent to the instructors of the Neonatal Resuscitation Program of the Brazilian Society of Paediatrics on parental counselling practices, medical limits for resuscitation of extremely preterm infants and medical considerations for decision-making in this group of infants. The analysis was descriptive.
Results Among 685 instructors, 560 (82%) agreed to participate. Only 5%–13% reported having opportunity for antenatal counselling parents: if called, 22% reported discussing with the family about the possibility not to resuscitate in the DR; 63% about the possibility of death in the DR and 89% about the possibility of death in the neonatal unit. If the parents did not agree with the advice of the paediatrician, 30%–50% of the respondents would follow the procedures they advised regardless of the opinion of the parents. The higher the gestational age, the lower is the percentage of paediatricians who believed that parents should participate in decision-making. Only 9% participants reported the existence of written guidelines at their hospital on initiation of resuscitation in the DR at limits of viability, but 80% paediatricians reported using some criteria for limiting resuscitation in the DR.
Conclusion The picture obtained in this study of Brazilian paediatricians indicates that resuscitation of extremely preterm infants is permeated by ambivalence and contradictions.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Communication; Length Of Stay; Adult; Clinical Ethics; Ethics Intervention; Female; Humans; Icu Length Of Stay; Intensive Care Units Pediatric/ Ethics; Interprofessional Relations; Life Support Care/ethics; Male; Middle Aged; Moral Distress; Pediatrics; Psychometrics/instrumentation/methods; Severity Of Illness Index; Stress Psychological/ Psychology; Teaching Rounds/manpower/methods; Unnecessary Procedures/ Ethics
Description
This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
1572-8498 Wocial, Lucia Ackerman, Veda Leland, Brian Benneyworth, Brian Patel, Vinit Tong, Yan Nitu, Mara Journal Article Netherlands HEC Forum. 2017 Mar;29(1):75-91. doi: 10.1007/s10730-016-9313-0.