Perinatal palliative care: a dedicated care pathway

2019 ◽  
pp. bmjspcare-2019-001849 ◽  
Author(s):  
Francesca Rusalen ◽  
Maria Elena Cavicchiolo ◽  
Paola Lago ◽  
Sabrina Salvadori ◽  
Franca Benini
Keyword(s):  
Palliative Care ◽  
Best Practice ◽  
Work Group ◽  
Care Pathway ◽  
Shared Care ◽  
University Hospital ◽  
Grade Method ◽  
Paediatric Palliative Care ◽  
Extremely Preterm ◽  
Perinatal Palliative Care

ObjectiveEnsure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents.DesignDuring 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway.SettingMaternal-Infant Department of Padua’s University Hospital.PatientsPnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group).InterventionsThe multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities.Main outcome measuresPrenatal and postnatal management, symptom’s treatment, end-of-life care.ResultsThe best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts’ mediation.ConclusionsPnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.

scholarly journals Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review

2019 ◽  
Author(s):  
Megan E Doherty ◽  
Liam Power ◽  
Robin Williams ◽  
Nahal Stoppels ◽  
Lynn Grandmaison Dumond
Keyword(s):  
Palliative Care ◽  
Chart Review ◽  
Retrospective Chart Review ◽  
Care Program ◽  
Trisomy 13 ◽  
Future Research ◽  
Factors Affecting ◽  
Paediatric Palliative Care ◽  
Perinatal Palliative Care ◽  
Limiting Condition

Abstract Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.

scholarly journals Neonatal and perinatal palliative care pathway: a tertiary neonatal unit approach

2021 ◽  
Vol 5 (1) ◽  
pp. e000820
Author(s):  
Abena N Akyempon ◽  
Narendra Aladangady
Keyword(s):  
Palliative Care ◽  
Care Pathway ◽  
Perinatal Care ◽  
Neonatal Unit ◽  
Bereavement Support ◽  
Perinatal Palliative Care ◽  
The Impact

A lack of well-structured guideline or care pathway results in inadequate, inconsistent and fragmented palliative care (PC) for babies and their families. The impact on the families could be emotionally and psychologically distressing. Not all neonatal units have specialist PC clinicians or teams, and such units will benefit from a well-planned perinatal PC pathway. In this article, we discuss a tertiary neonatal unit perinatal care pathway which provides guidance from the point of diagnosis and establishment of eligibility of a baby for PC through to care after death and bereavement support for families. Planning PC with families which encourages family-centred and individualised approach is also discussed.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

2020 ◽  
pp. 026921632096759
Author(s):  
Fenella J Gill ◽  
Zahraa Hashem ◽  
Roswitha Stegmann ◽  
Samar M Aoun
Keyword(s):  
Palliative Care ◽  
Scoping Review ◽  
English Language ◽  
Support Needs ◽  
Care Needs ◽  
Caregiver Support ◽  
Paediatric Palliative Care ◽  
Heterogenous Population ◽  
Parent Caregivers ◽  
The Individual

Background: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers’ needs. Aim: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. Design: A scoping review Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). Results: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. Conclusion: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

scholarly journals Palliative care and complex chronic conditions since the perspective of healthcare professionals

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
A Doñate-Martínez ◽  
L Llop ◽  
J Garcés
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Early Identification ◽  
Chronic Conditions ◽  
Healthcare Professionals ◽  
Care Pathway ◽  
Holistic View ◽  
Complex Chronic Conditions ◽  
Symptom Intensity

Abstract Background According to the WHO, palliative care (PC) is applicable early in the course of illness together with other curative therapies. Early PC has demonstrated beneficial effects on quality of life and symptom intensity among cancer patients. However, PC is not as early integrated on the care pathway of complex chronic conditions (CCC). This abstract presents barriers and needs identified to effectively implement early PC on CCC performed under the EU-funded InAdvance project (ref.: 825750). Methods Semi-structured interviews were performed with 16 healthcare professionals (HPs) from primary care and hospital settings working with older patients with CCC in Valencia (Spain). Results Interviews reported that main needs identified to provide early PC are: (a) coordinated strategies between multi-setting HPs to an early identification of CCC patients in need of PC; (b) adequate resources to attend patients' PC needs from a holistic view, i.e. psychosocial and spiritual needs; and (c) early integration of basic PC at primary care teams. The main barriers identified were: (a) stereotypes associated to the traditional PC approach; (b) poor knowledge from HPs of the PC holistic approach; and (c) lack of specific protocols or pathways for CCC in need of PC. Conclusions Specific skills and resources are the most relevant needs to effectively provide early PC among patients with CCC. First, it is urgent to demystify the negative culture-related vision of PC that is commonly associated to sedation and last days of a person's life. Also, multidisciplinary HPs require specific training to identify and provide early PC tailored to CCC. And, it is required a strategic and multi-setting organizational approach with fluent information flow and coordinated roles. Key messages Healthcare expenditure would be considerably reduced, especially at hospital and emergency units, with an early identification of patients with CCC in need of PC. Empowering primary HPs in PC would improve the quality of care of patients with CCC.

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