International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS
life-limiting conditions; Pediatric palliative care; terminal illness; life-threatening conditions; international standards for pediatric palliative care
CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC. METHODS: A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in English over the past 5 years (2016-2020), but older articles were considered when relevant. The consensus on the fundamental points, standards of care and paper contents was reached by open discussion. RESULTS: Fundamental points were defined regarding the definition of PPC, eligibility criteria and the magnitude of the need for PPC, while standards were redefined for the following six areas: 1) clinical, developmental, psychological, social, ethical and spiritual needs; 2) end-of-life care; 3) care models and settings of care; 4) PPC in humanitarian emergencies; 5) care tools; and 6) education and training for healthcare providers. CONCLUSION: The present document, developed with the contribution of an international group of experts from different countries, experiences and models of care, provides fundamental points and standards for a wider implementation of PPC worldwide.
Benini F; Pappadatou D; Bernadá M; Craig F; De Zen L; Downing J; Drake R; Freidrichsdorf S; Garros D; Giacomelli L; Lacerda A; Lazzarin P; Marceglia S; Marston J; Muckaden MA; Papa S; Parravicini E; Pellegatta F; Wolfe J
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.12.031" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.12.031</a>
Mortality trends for pediatric life-threatening conditions.
Pediatrics; Adolescent; British Columbia; Cause Of Death; Child; Child Mortality/trends; Child Preschool; Female; Hospice; Hospice Care/statistics & Numerical Data; Humans; Illness; Infant; Infant Newborn; Life-threatening Conditions; Male; Mortality; Palliative; Palliative Care/statistics & Numerical Data; Pediatric
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
Chavoshi N; Miller T; Siden H
The American Journal Of Hospice & Palliative Care
2014
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/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</a>
Mortality Trends for Pediatric Life-Threatening Conditions
hospice; mortality; illness; life-threatening conditions
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
2014-03
Chavoshi N; Miller T; Siden H
The American Journal Of Hospice & Palliative Care
2014
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/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</a>
Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis
Advance care planning; Life-threatening conditions; Perinatal Care
Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2) receiving care at the high-risk fetal center. Individualized care included opportunities for establishing goals, labor/delivery planning, grief support, and pediatric palliative care support. Results: A total of 107 patients were included during the two-year clinical pilot program. Of those who continued their pregnancy, 45% had care goals focused on comfort while 55% had goals focused on life prolongation. A significant proportion in both groups experienced a fetal or neonatal death. For babies who received comfort-focused care, one-third were transferred to hospice or home. Conclusions: A comprehensive perinatal palliative care pathway ensures that more families receive options of pre- and postnatal palliative care supports in varied circumstances where there is significant risk of fetal and neonatal mortality.
Lord S; Williams R; Pollard L; Ives-Baine L; Van MS; Goodman K; Mackenzie J; Salminen R; Rapoport A
Journal of Palliative Medicine
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/10.1089/jpm.2022.0076" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0076</a>
Stories of paediatric palliative care: a qualitative study exploring health care professionals' understanding of the concept
Child; Health Personnel/Psychology; Health Care Professionals; Humans; Life-Limiting Conditions; Life-Threatening Conditions; Palliative Care/methods; Palliative Care; Qualitative Research; Quality of Life; Storytelling; Terminal Care Concept; Thematic Analysis; Pediatric Palliative Care (PPC)
BACKGROUND: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care (PPC) with death or dying and that they find the concept challenging to understand and difficult to implement. Attending to HCPs' stories may provide a richer account of their understanding of PPC. Thus, the aim of this study was to explore PPC stories narrated by HCPs to gain increased insight into their understanding of what PPC entails. METHODS: This qualitative study collected data from four focus group interviews with 21 HCPs from different units in two Norwegian hospitals. Stories told by the HCPs to illustrate their comprehension of PPC were analysed following thematic analysis procedures. RESULTS: Four themes were identified illustrating what PPC meant to the participants: creating spaces for normality, providing tailored support for the family, careful preparations for saying goodbye and experiencing dilemmas and distress. The stories centred on family care, particularly relating to dramatic or affective situations when the death of a child was imminent. CONCLUSION: The stories reflect how the HCPs view PPC as a specific field of health care that requires particular professional sensitivity, including good communication, collaboration and planning. Thus, the HCPs in this study demonstrated knowledge about the core qualities needed to succeed in PPC. However, similar to previous research, the stories illustrate that how HCPs speak about PPC is strongly associated with end-of-life care, and by that the HCPs do not capture the breadth of the PPC concept. The findings highlight the importance of increasing knowledge about the meaning and content of PPC among HCPs in order to maintain quality of life for all children with life-limiting or life-threatening conditions throughout their illness trajectory.
Riiser K; Holmen H; Winger A; Steindal SA; Castor C; Kvarme LG; Lee A; Lorentsen VB; Misvaer N; Früh EA
BMC Palliat Care
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/10.1186/s12904-022-01077-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01077-1</a>