Pediatric patients receiving palliative care in Canada: results of a multicenter review
Child; Cross-Sectional Studies; Humans; Canada; Preschool; infant; Congenital Abnormalities/mortality; Neoplasms/mortality; Nervous System Diseases/mortality; Palliative Care/utilization; retrospective studies
OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN: Retrospective review of medical records combined with a survey of each program. SETTING: Seven pediatric palliative care programs based in tertiary care settings and 1 freestanding children's hospice. PARTICIPANTS: The programs cared for 317 children during 2002, of whom 123 died during that year. An additional 32 children died by the end of 2003. MAIN EXPOSURE: Pediatric palliative care program. RESULTS: Nearly half (48.6%) of the patients were younger than 5 years, and almost half of these were younger than 1 year. Primary diagnoses were disorders of the nervous system (39.1%), malignancies (22.1%), and conditions arising in the perinatal period or congenital anomalies (22.1%). Most of the children (43.9%) died at home, with those centers reporting more comprehensive home care services having the highest percentage of home deaths. From a national perspective, between 5% and 12% of the children who could benefit from palliative care received services from 1 of these programs. CONCLUSIONS: Pediatric palliative care programs in Canada care for a diverse population of patients with a wide range of age and disease conditions. Only a small percentage of children who die, however, receive services from these dedicated programs.
2007
Widger K; Davies D; Drouin DJ; Beaune L; Daoust L; Farran RP; Humbert N; Nalewajek F; Rattray M; Rugg M; Bishop M
Archives Of Pediatrics & Adolescent Medicine
2007
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).
Journal Article
<a href="http://doi.org/10.1001/archpedi.161.6.597" target="_blank" rel="noreferrer">10.1001/archpedi.161.6.597</a>
Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. RESULTS: All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. INTERPRETATION: Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
Widger K; Davies D; Adam R; Vadeboncoeur C; Liben S; Amrita S; Stenekes S; Claude C; Daoust L; Gregoire Marie-Claude; Robertson M; Hodgson-Viden H; Laflamme J; Siden H
Cmaj Open
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).
<a href="http://doi.org/10.9778/cmajo.20160054" target="_blank" rel="noreferrer">http://doi.org/10.9778/cmajo.20160054</a>
An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions
Acute Pain/therapy; Adolescent; Adult; Advance Directives; Aged; Attitude Of Health Personnel; Canada; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Medical Staff Hospital/psychology; Middle Aged; Nursing Staff Hospital/psychology; Palliative Care/standards; Pediatric Nursing/standards; Practice Guidelines As Topic; Respiratory Distress Syndrome Adult/therapy; Surveys And Questionnaires; Young Adult
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family, the OPD is prescribed by the attending physician whenever judged appropriate. The OPD can then be initiated by the bedside nurse when necessary; the physician is notified after the first dose is administered.
OBJECTIVES:
The study objectives were to evaluate the perceptions and experience of the medical/nursing staff towards the use of the OPD.
METHODS:
A survey was distributed to all physicians/nurses working on wards with pediatric palliative care patients. Answers to the survey were anonymous, done on a voluntary basis, and after consent of the participant.
RESULTS:
Surveys (258/548) were answered corresponding to a response rate of 47%. According to the respondents, the most important motivations in using the OPD were the desire to relieve patient's distress and the speed of relief of distress by the OPD; the most important obstacles were going against the patient's/his or her family's wishes and fear of hastening death. The respondents reported that the OPD was frequently (56%) or always (36%) effective in relieving the patient's distress. The respondents felt sometimes (16%), frequently (34%), or always (41%) comfortable in giving the OPD. They thought the OPD could never (12%), rarely (32%), sometimes (46%), frequently (8%), or always (1%) hasten death. Physicians were less favorable than nurses with the autonomy of bedside nurses to initiate the OPD before notifying the physician (pā=ā0.04). Overall, 95% of respondents considered that they would use the OPD in the future.
CONCLUSIONS:
Data from this survey shows that respondents are in favor of using the OPD at SJH and find it effective. Further training as well as support for health care professionals are mandatory in such palliative care settings.
Bidet G; Daoust L; Duval M; Ducruet T; Toledano B; Humbert N
Journal Of Palliative Medicine
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: 10.1089/jpm.2015.0100