Increasing Trend and Effects of Pediatric Palliative Care on Children with Non-Cancer Diagnoses
Child; child; Palliative Care; survival; terminal care; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; morphine; Only Child; artificial ventilation; cancer survival; ventilator; cancer patient; analgesia; trend study
Objectives Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients. Methods This retrospective cohort study used the integrative hospital medical database between 2014 and 2018 to analyze the clinical characteristics, diagnoses, and end-of-life care for patients aged less than 20 who had died in our children's hospital, a tertiary referral medical center implementing PPC shared-care. Results In our cohort of 323 children, 240 (74.3%) were noncancer patients who a younger median age at death (5 vs. 122 months, P < 0.001), lower rate of PPC involvement (16.7 vs. 66%, P < 0.001), and fewer survival days after PPC consult compared to cancer patients (3 vs. 11, P = 0.01). Patients not receiving PPC had more ventilator support (OR 9.9, P < 0.001), and less morphine use on their final day of life (OR 0.1, P < 0.001). Also, patients not receiving PPC had more cardiopulmonary resuscitation on the last day of life (OR 15.3, P < 0.001) and died in the ICU (OR 8.8, P < 0.001). There was an increasing trend of noncancer patients receiving PPC between 2014 and 2018 (P < 0.001). Conclusions High disparities exist between children receiving PPC in cancer versus noncancer patients. The concept of PPC is gradually becoming accepted in noncancer children and is associated with more pain-relief medication and less suffering during end-of-life care.
Chen SH; Wu ET; Wang CC; Yu Su M; Chang CH; Chen HL; Lu FL; Cheng SY
Journal of Pain and Symptom Management
2023
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/10.1016/j.jpainsymman.2023.05.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.05.018</a>
Judge rules that baby should be removed from ventilator and given palliative care
artificial ventilation; palliative therapy; ventilator; article; human; infant; Palliative Care; Ventilators Mechanical
An eight week old baby should no longer be kept alive on a ventilator and should be given palliative care to spare him the risk of a “painful, agonising death,” a High Court judge has declared.1 There are no further treatment options for the baby, who was referred to in court as Z, said Mr Justice Hayden. The judge was satisfied that intensive care was futile and that it had “come to place an insupportable burden” on the child. Hayden granted Sheffield Teaching Hospitals NHS Foundation Trust a declaration that it would be in the best interests of the baby to leave intensive care and to have palliative care only. The trust had hoped to reach agreement with the child’s Muslim parents and avoid a court application. But because of …
Dyer C
BMJ Clinical Research
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/10.1136/bmj.m2502" target="_blank" rel="noreferrer noopener">10.1136/bmj.m2502</a>
Providing cost-effective and coordinated care for children with medical complexity
adolescent; child; female; home care; human; major clinical study; male; controlled study; nurse; multicenter study; conference abstract; caregiver; gastrostomy; cerebral palsy; pediatrician; outpatient; administrative personnel; artificial ventilation; congenital heart disease; diagnosis; fatigue; limited mobility; machine; medical technology; multidisciplinary team; neuromuscular disease; salary; stress; tracheostomy; ventilator; working time
Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children and families are at risk of fragmented care, sub-optimal continuity and high healthcare resource utilization due to their multiple medical issues and care needs. Consequently, the Children's Complex and Home Care Services (CCHS) was established in our institution in April 2016 with the primary aims of providing coordinated, cost-effective and patient- and family-centered care to CMC and their families. This service is run by a multi-disciplinary team of pediatricians, nurses, allied health and administrative staff. CMC in our context have a chronic life-limiting condition that involves at least three body systems and are often technologically dependent with limited mobility. In view of the numerous healthcare professionals involved in their care, multiple medical appointments are often scheduled which result in significant caregiver stress and fatigue. One of the key service implementations was multidisciplinary clinics whereby children are seen over the course of 1-3 hours by multiple clinical, nursing and allied health specialists. The purpose of this study is to describe CCHS service implementations, characterize CCHS patient characteristics and evaluate how multidisciplinary clinics have reduced their healthcare resource utilization. Method(s): 55 patients who were enrolled in the CCHS between April 2016 and October 2018 were studied. Result(s): Patient ages ranged from 2 months to 14.3 years old at time of enrolment. The majority of patients had underlying primary genetic diagnoses (47.2%), and other patients had either the primary diagnosis of cerebral palsy (20%), congenital cardiac disease (5.4%), neuromuscular disease (3.6%) or another or undiagnosed underlying condition (23.6%). Medical technology required at time of enrolment included enteral devices such as nasogastric/nasojejunal tubes or gastrostomies (94.5%), suctioning machines (54.5%), ventilator support (34.5%) and tracheostomies (16.4%). CCHS multidisciplinary clinics managed to reduce the number of outpatient attendances by 6.8 visits per patient-year for CMC enrolled into the service. This saves caregivers from an equivalent number of workdays of lost salary, and translates to C 450 of savings per patient per year on just transportation costs alone. Conclusion(s): CMC are heterogeneous in conditions but similar in care needs, and reducing outpatient attendances and healthcare costs is possible with coordinated multi-disciplinary clinics.
Chow C; Shahdadpuri R
Archives of Disease in Childhood
2019
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).