TY - JOUR
T1 - Lasting Legacy
T2 - Maternal Perspectives of Perinatal Palliative Care
AU - Kamrath, Heidi J.
AU - Osterholm, Erin A
AU - Stover-Haney, Rachael
AU - George, Thomas
AU - O'Connor-Von, Susan
AU - Needle, Jennifer
N1 - Publisher Copyright:
© Copyright 2019, Mary Ann Liebert, Inc., publishers 2019.
PY - 2019/3/1
Y1 - 2019/3/1
N2 - 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.
AB - 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.
KW - hospice
KW - palliative care
KW - perinatal
KW - prenatal
UR - http://www.scopus.com/inward/record.url?scp=85062046710&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85062046710&partnerID=8YFLogxK
U2 - 10.1089/jpm.2018.0303
DO - 10.1089/jpm.2018.0303
M3 - Article
C2 - 30388063
AN - SCOPUS:85062046710
SN - 1096-6218
VL - 22
SP - 310
EP - 315
JO - Journal of palliative medicine
JF - Journal of palliative medicine
IS - 3
ER -