1 Children's Hospitals and Clinics of Minnesota , St. Paul, Minnesota.
2 Department of Pediatrics, University of Minnesota , Minneapolis, Minnesota.
J Palliat Med. 2019 Mar;22(3):310-315. doi: 10.1089/jpm.2018.0303. Epub 2018 Nov 12.
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.
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.
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.
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.
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.
许多导致婴儿死亡的主要原因都是在产前诊断出来的，这为医务人员提供了提供围产期姑息治疗计划的机会。
本研究通过描述婴儿与医疗保健系统的互动，以及深入了解在提供围产期姑息治疗后母亲的体验，为文献增添了新的内容。
该研究在中西部的一所公立大学附属医院进行。第一阶段是对 27 对接受围产期姑息治疗的母婴电子病历进行回顾性审查，其中 18 对选择制定围产期姑息治疗计划。第二阶段是对其中 7 位母亲进行焦点小组和访谈。
在本研究的初始阶段，结果显示出婴儿临终轨迹的差异，包括死亡地点、侵入性程序的数量，以及在不进行维持生命治疗和撤回维持生命治疗的情况下死亡。这表明，如果没有制定围产期姑息治疗计划，对于产前诊断出生命有限状况的婴儿，默认的治疗方法很可能是侵入性和痛苦的，往往几乎没有长期生存的可能性。对访谈和焦点小组数据的分析揭示了三个主题：护理、选择和遗产。
作者利用他们在医疗保健系统中的经验，从焦点小组和访谈数据中得出了对实践的启示，护理可以促进妇女感到被关心和关爱，以及在脆弱的孕期中提供希望的机会。
