Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions

2021 ◽  
pp. 082585972110467
Author(s):  
Komal G. Tewani ◽  
Pooja A. Jayagobi ◽  
Suresh Chandran ◽  
Amudha J. Anand ◽  
Edwin W. H. Thia ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Holistic Care ◽  
Baseline Survey ◽  
Care Plans ◽  
Care Specialist ◽  
Care Package ◽  
Advance Care ◽  
Perinatal Palliative Care

Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed ‘Lethal’ fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.

Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study

2017 ◽  
Vol 10 (2) ◽  
pp. e13-e13 ◽  
Author(s):  
Stuart Ekberg ◽  
Susan Danby ◽  
Anthony Herbert ◽  
Natalie K Bradford ◽  
Patsy Yates
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Self Report ◽  
Palliative Care Specialist ◽  
Communicative Practices ◽  
Paediatric Palliative Care ◽  
Care Specialist ◽  
Self Report Data ◽  
Limiting Condition

ObjectiveDiscussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations.Methods9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised.FindingsThe study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur.ConclusionsThese communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.

scholarly journals Outcomes and factors influencing care decisions in life-threatening fetal and neonatal anomalies

2020 ◽  
Author(s):  
Esther J Lee ◽  
Simone Stenekes ◽  
Michael Harlos
Keyword(s):  
Palliative Care ◽  
Chart Review ◽  
Care Service ◽  
Palliative Care Service ◽  
Retrospective Chart Review ◽  
Inclusion Criteria ◽  
Factors Influencing ◽  
Life Threatening ◽  
Perinatal Palliative Care ◽  
The Mean

Objective: A retrospective chart review was undertaken to describe the outcomes following the diagnosis of a life-threatening fetal and neonatal anomaly. Study Design: Criteria for a life-threatening anomaly included genetic conditions, renal and pulmonary diseases, central nervous system anomalies (CNS), and cardiac defects. Information that could impact decision making was collected from provincial databases Results: 176 patients met the inclusion criteria. The majority of the diagnoses were in the genetic and CNS categories. 58% (n=103) decided to terminate the pregnancy. When a live birth occurred (n=39), the mean length of survival was 13.5 days (range 1-156 days), with one death occurring at home. Conclusions: Ethnicity and geographical factors were associated with the decision to terminate a pregnancy. The involvement of the palliative care service was associated with decreased interventions. Further research to determine the needs of families would be helpful in identifying program priorities in perinatal palliative care.

scholarly journals The Compassionate Communities Connectors model for end-of-life care: a community and health service partnership in Western Australia

2020 ◽  
Vol 14 ◽  
pp. 263235242093513
Author(s):  
Samar M. Aoun ◽  
Julian Abel ◽  
Bruce Rumbold ◽  
Kate Cross ◽  
Jo Moore ◽  
...  
Keyword(s):  
Palliative Care ◽  
Service Providers ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Needs ◽  
Advanced Illness ◽  
Caregiver Support ◽  
Care Plans ◽  
Practical Support ◽  
Community Volunteers

Background: There is an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness. Aim: This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care. Methods: The approach seeks to map and mobilise people’s personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention’s effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers. Conclusion: It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital.

scholarly journals Developing a Perinatal Palliative Care Service Package for women with fetal Anomaly Diagnosis: Protocol for Mixed Methods Study

2020 ◽  
Author(s):  
ziba Raisi Dehkordi ◽  
Shahnaz Kohan ◽  
Maryam Rassouli ◽  
Elahe Zarean ◽  
Azadeh malekian
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Mixed Methods ◽  
Cultural Context ◽  
Care Service ◽  
Palliative Care Service ◽  
Mixed Methods Study ◽  
Fetal Anomaly ◽  
Service Package ◽  
Perinatal Palliative Care

Abstract Background diagnosis of perinatal anomalies is a stressful experience that can negatively affect mothers, families, health-care systems, and societies. Perinatal palliative care (PPC) is a new development in maternity services which focuses on emotional, spiritual, social, and symptom management and provides care for women and families with fetal anomaly diagnosis. Therefore, this study aimed to develop a service package for women with fetal anomaly diagnosis in socio-cultural context of Iran. Methods This research is an exploratory mixed methods study with the qualitative-quantitative sequencing design that consists of four sequential phases. In the first phase, following a qualitative approach, the researcher will explore the needs and experiences of women with fetal anomaly diagnosis, their families, health care providers and policy-makers. At the second phase, based on the review of the literature, Program, guideline, service package and protocol for care of women and their families after perinatal anomaly diagnosis will be identified in other countries. In the third phase, recommendations from qualitative phase and literature review will be combined, the initial protocol of the palliative care service package for perinatal anomaly diagnosis will be identified and prioritized. In the fourth phase, the opinion of experts about this service package will be collected by using RAND/UCLA Appropriateness Method technique and the applicability of the service package’s recommendations in clinical settings will be determined. Discussion The results of this Mixed Methods study are expected response the needs and experiences of the women with perinatal anomaly diagnosis being met in the socio-cultural context of Iran and a service package for palliative care of these women developed.

scholarly journals Palliative Care Service Utilization and Advance Care Planning for Adult Glioblastoma Patients: A Systematic Review

Cancers ◽  
2021 ◽  
Vol 13 (12) ◽  
pp. 2867
Author(s):  
Adela Wu ◽  
Gabriela Ruiz Colón ◽  
Rebecca Aslakson ◽  
Erqi Pollom ◽  
Chirag B. Patel
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Overall Survival ◽  
Advance Care Planning ◽  
Care Service ◽  
Palliative Care Service ◽  
Care Planning ◽  
Care Needs ◽  
Advance Care ◽  
Hospice Use

Glioblastoma (GBM) has a median overall survival of 16–21 months. As patients with GBM suffer concurrently from terminal cancer and a disease with progressive neurocognitive decline, advance care planning (ACP) and palliative care (PC) are critical. We conducted a systematic review exploring published literature on the prevalence of ACP, end-of-life (EOL) services utilization (including PC services), and experiences among adults with GBM. We searched from database inception until 20 December 2020. Preferred reporting items for systematic reviews guidelines were followed. Included studies were assessed for quality using the Newcastle-Ottawa Scale. The 16 articles were all nonrandomized studies conducted in six countries with all but two published in 2014 or later. ACP documentation varied from 4–55%, PC referral was pursued in 39–40% of cases, and hospice referrals were made for 66–76% of patients. Hospitalizations frequently occurred at the EOL with 20–56% of patients spending over 25% of their overall survival time hospitalized. Many GBM patients do not pursue ACP or have access to PC. There is a dearth of focused and high-quality studies on ACP, PC, and hospice use among adults with GBM. Prospective studies that address these and additional aspects related to EOL care, such as healthcare costs and inpatient supportive care needs, are needed.

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