Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.
Title
Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.
Creator
Wool C; Cote-Arsenault D; Perry Black B; Denney-Koelsch E; Kim S; Kavanaugh K
Identifier
DOI: 10.1089/jpm.2015.0266
Publisher
Journal Of Palliative Medicine
Date
2016
Subject
Bereavement; Critical Care/organization & Administration; Cross-sectional Studies; Female; Fetal Mortality; Humans; Infant Newborn; Palliative Care/organization & Administration; Parents/psychology; Perinatal Care/organization & Administration; Pregnancy; Professional-family Relations; Surveys And Questionnaires; United States
Description
BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.
OBJECTIVE:
To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.
DESIGN:
A cross-sectional survey design included 48 items addressing funding and domains of quality care.
SUBJECTS:
Program representatives from 30 states (n = 75).
PRINCIPAL RESULTS:
Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs.
CONCLUSION:
This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy affected by a life-limiting diagnosis.
OBJECTIVE:
To examine characteristics of programs and services provided, assess alignment with the National Consensus Project domains of care, and identify providers and disciplines involved in programs.
DESIGN:
A cross-sectional survey design included 48 items addressing funding and domains of quality care.
SUBJECTS:
Program representatives from 30 states (n = 75).
PRINCIPAL RESULTS:
Perinatal palliative care programs are housed in academic medical centers, regional or community hospitals, local hospices, or community-based organizations. Significant differences by program setting were observed for type of fetal diagnoses seen, formal training in communicating bad news to parents, mechanisms to ensure continuity of care, and reimbursement mechanisms. One hundred percent of programs provided attention to spiritual needs and bereavement services; 70% of programs are less than 10 years old. Follow-up with parents to assess whether goals were met occurs at 43% of the perinatal palliative care programs. Formal measures of quality assessment were articulated in 38% of programs.
CONCLUSION:
This study dramatically adds to the literature available on perinatal palliative care program settings, types, and domains of care. It is clear that there are a variety of types of programs and that the field is still developing. More work is needed to determine which quality measures are needed to address perinatal care needs in this population.
Rights
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).
Citation List Month
March 2016 List
Citation
Wool C; Cote-Arsenault D; Perry Black B; Denney-Koelsch E; Kim S; Kavanaugh K, “Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.,” Pediatric Palliative Care Library, accessed April 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/10580.