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Examining Prenatal Decision-Making for Infants with Life-Threatening Illness

Overview

About this study

The study is being done to determine effective and ineffective advanced communication methods neonatologists use to reach decisions with families regarding the care for infants with severe life-threatening diagnoses, specifically, the non-initiation or provision of resuscitation for infants with likely very poor but uncertain prognoses for whom survival may be associated with a severely diminished quality of life. The study will also examine how parents are able to understand the information given to them by neonatologists during the prenatal consultations under conditions of emotional and physical distress and how they experience the consultation.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  •  Age 18 years or older
  • Speak English
  • Must have medical decision-making capacity as determined by the obstetrician and neonatologist
  • Be eligible for a prenatal consultation with Neonatal Medicine in which decisions regarding noninitiation or provision of neonatal resuscitation are considered standard of care.
    • prognosis is uncertain but likely to be very poor and survival may be associated with a diminished quality of life for the child. This would include but is not limited to unborn infants with anticipated extremely preterm birth less than 25 weeks’ gestation or severe and life-limiting congenital anomalies including but not limited to severe pulmonary hypoplasia, Trisomy 13 or 18, or severe congenital diaphragmatic hernia.

Exclusion Criteria: 

  • Under the age of 18
  • Non-English speaking
  •  Prenatal consultation is not indicated

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Christopher Collura, M.D.

Closed for enrollment

Contact information:

Ashley Morey

(608)392-9521

Morey.Ashley@mayo.edu

More information

Publications

Publications are currently not available

More about research at Mayo Clinic

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CLS-20272692

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