End-of-life Care Patterns Associated With Pediatric Palliative Care Among Children Who Underwent Hematopoietic Stem Cell Transplant.
Pediatrics; Parents; Stem Cell Transplant; End Of Life Care; Multicenter; Oncology Care; Perspectives; Immunology; Outcomes; Transplantation; Advanced Cancer; Chemotherapy; Palliative Care; Bone-marrow-transplantation Hematology; Integration; Psychological Distress; Index Medicus
End Of Life; Palliative Care; Pediatrics; Stem Cell Transplant
Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown. Therefore, we evaluated whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive. Medical records of children who underwent SCT at Boston Children's Hospital/Dana-Farber Cancer Institute for any indication from September 2004 to December 2012 and did not survive were reviewed. Child demographic and clinical characteristics and PPC consultation and EOL care patterns were abstracted. Children who received PPC (PPC group) were compared with those who did not (non-PPC group). Children who received PPC consultation (n = 37) did not differ from the non-PPC group (n = 110) with respect to demographic or clinical characteristics, except they were more likely to have undergone unrelated allogeneic SCT (PPC, 68%; non-PPC, 39%; P = .02) or to have died from treatment-related toxicity (PPC, 76%; non-PPC, 54%; P = .03). PPC consultation occurred at a median of .7 months (interquartile range [IQR], .4 to 4.2) before death. PPC consultations most commonly addressed goals of care/decision-making (92%), psychosocial support (84%), pain management (65%), and non-pain symptom management (70%). Prognosis discussions (ie, the likelihood of survival) occurred more commonly in the PPC group (PPC, 97%; non-PPC, 83%; P = .04), as did resuscitation status discussions (PPC, 88%; non-PPC, 58%; P = .002). These discussions also occurred earlier in the PPC group, for prognosis a median of 8 days (IQR, 4 to 26) before death compared with 2 days (IQR, 1 to 13) in the non-PPC group and for resuscitation status a median of 7 days (IQR, 3 to 18) compared with 2 days (IQR, 1 to 5) in the non-PPC group (P < .001 for both of the timing of prognosis and resuscitation status discussions). The PPC group was also was more likely to have resuscitation status documented (PPC, 97%; non-PPC, 68%; P = .002). With respect to patterns of care, compared with non-PPC, the PPC group was as likely to die in a medicalized setting (ie, the hospital) (PPC, 84%; non-PPC, 77%; P = .06) or have hospice care (PPC, 22%; non-PPC, 18%; P = .6). However, among children who died in the hospital, those who received PPC were more likely to die outside the intensive care unit (PPC, 80%; non-PPC, 58%; P = .03). In addition, the PPC group was less likely to receive intervention-focused care such as intubation in the 24 hours before death (PPC, 42%; non-PPC, 66%; P = .02) or cardiopulmonary resuscitation (PPC, 3%; non-PPC, 20%; P = .03) at EOL. Children who received PPC for at least a month were more likely to receive hospice care (PPC, 41%; non-PPC, 5%; P = .01). Children who underwent SCT and did not survive were likely to die in a medicalized setting, irrespective of PPC. However, PPC was associated with less intervention-focused care and greater opportunity for EOL communication and advance preparation. In the intense, cure-oriented SCT setting, PPC may facilitate advance care planning in this high-risk population.
Ullrich C; Lehmann L; London WB; Guo D; Sridharan M; Koch R; Wolfe J
Biology Of Blood And Marrow Transplantation
2016
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).
DOI: 10.1016/j.bbmt.2016.02.012
Facilitators and Barriers Affecting Implementation of Neonatal Palliative Care by Nurses in Mainland China
death; neonatal; China; newborn; acceptance; emotional; social; analgesia; well-being; nurses; education; nurse; palliative; barriers; skill; human; article; female; male; adult; aged; therapy; scale; care; multicenter; attitude; Chinese; clinical; controlled; intensive; major; study; unit; decision; making; middle; facilitators; guidance; script; simplified; vocational
Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates in mainland China. A simplified Chinese version of the Neonatal Palliative Care Attitude Scale was piloted, administered, and analyzed using survey methods. Nurses in neonatal intensive care units in mainland China regardless of experience in the field were invited to take part in. Over a five-month period in 2019, we surveyed neonatal nurses from 40 hospitals in five provinces of China. The response rate was 92.5% (N = 550). This study identified eight facilitators and four barriers to neonatal palliative care implementation. In terms of nurses' attitudes on providing palliative care, younger and older nurses were more positive, whereas middle-aged nurses were less so. Nurses' emotional wellbeing was rarely impacted by neonatal death. They considered neonatal palliative care, particularly pain management, to be just as important as curative treatment. Parents were invited to participate in decision-making by nurses. Nurses reported having access to professional counseling and talking about their concerns with other healthcare professionals. The following barriers to neonatal palliative care were identified in this study that were not observed in the original English version scale research in 2009: a lack of clinicians, time, clinical skills, systematic education, neonatal palliative care experience, and social acceptance. Future research is required to investigate each barrier in order to improve the implementation of neonatal palliative care in mainland China. Copyright © 2022 Zhong, Black, Kain and Song.
Zhong Y; Black BP; Kain VJ; Song Y
Frontiers in Pediatrics
2022
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/10.3389/fped.2022.887711">10.3389/fped.2022.887711</a>