Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Infant Newborn; Decision Making; Germany; terminal care; adult; female; human; major clinical study; male; newborn; quality of life; aged; interview; physician; life sustaining treatment; shared decision making; cross-sectional study; medical ethics; middle aged; adolescent; parent; conference paper; decision making; euthanasia; treatment withdrawal; socioeconomics; attitude to health; sociodemographics; comprehension; German (language)
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective: To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, setting, and participants: This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main outcomes and measures: Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results: The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and relevance: Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
Schneider K; Roll S; Tissen-Diabate T; Buhrer C; Garten L
JAMA Network Open
2024
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).
<a href="http://doi.org/10.1001/jamanetworkopen.2023.53264" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.53264</a>
Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial
child; human; palliative therapy; controlled study; female; major clinical study; male; article; adolescent; school child; young adult; quality of life; total quality management; outcome assessment; randomized controlled trial; treatment outcome; cancer center; coping behavior; socioeconomics; Pediatric Quality of Life Inventory; stress management; cancer specific quality of life; Connor-Davidson Resilience Scale; Hope Scale; patient-reported outcome; Psychological Distress Scale; psychosocial development; environmental resilience; post hoc analysis
Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer.
Lau N; Bradford M C; Steineck A; Scott S; Bona K; Yi-Frazier J P; McCauley E; Rosenberg A R
Palliative Medicine
2020
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).
<a href="http://doi.org/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">10.1177/0269216319886215</a>
Barriers of Palliative Care in Neonatal Intensive Care Units
Health Personnel Attitude; Organization And Management; Psychology; Adult; Clinical Competence; Cross Sectional Study; Female; Human; Iran; Islam; Male; Middle Aged; Neonatal Intensive Care Unit; Newborn; Nursing Staff; Organization; Palliative Therapy; Reproducibility; Socioeconomics; Terminal Care
OBJECTIVE: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses' attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses' attitude toward barriers in providing NPC in Southeast Iran. METHOD: In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran. RESULTS: Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of "insufficient resources" (3.42 +/- 0.65) and "inappropriate personal and social attitudes" (2.33 +/- 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of "inappropriate organizational culture" and/or "inadequate nursing proficiency." Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62). CONCLUSION: The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants' EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses.
Azzizadeh Forouzi M; Banazadeh M; Ahmadi JS; Razban F
The American Journal Of Hospice & Palliative Care
2017
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).
<a href="http://doi.org/10.1177/1049909115616597" target="_blank" rel="noreferrer">10.1177/1049909115616597</a>