Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care

Title

Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care

Creator

Kamrath H J; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J

Publisher

Journal of Palliative Medicine

Date

2019

Subject

Infant; Humans; Female; palliative care; hospice; Retrospective Studies; Adult; Palliative Care/*organization & administration; perinatal; Prenatal Diagnosis; Mothers/*psychology; Newborn; Patient Care Planning/*organization & administration; prenatal; Fetal Diseases/diagnosis/*mortality; Perinatal Care/*organization & administration

Description

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.

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

August 2020 List

Collection

Citation

Kamrath H J; Osterholm E; Stover-Haney R; George T; O'Connor-Von S; Needle J, “Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care,” Pediatric Palliative Care Library, accessed July 26, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17175.

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