title: Examining autonomy's boundaries: a follow-up review of perinatal mortality cases in UK independent midwifery.
abstract: BACKGROUND
  An earlier matched cohort study in the United Kingdom found a significantly higher perinatal mortality rate for births booked under an independent midwife compared with births in National Health Service units (1.7% [25/1,508] vs 0.6% [45/7,366]). This study examined independent midwives' management and decision making in the 15 instances of perinatal death that occurred at term.
  
  
  METHODS
  Thematic analysis of independent midwives' case notes was performed in instances of perinatal mortality. Semi-structured interviews were conducted with the midwives concerned.
  
  
  RESULTS
  Home birth was attempted in 13 of the 15 cases. Significant (often multiple) antenatal risk factors were identified in 13 cases, including twin pregnancy, planned vaginal births after cesarean section, breech presentations, and maternal illness. Several women had declined some or all routine antenatal screening. Three deaths occurred before labor onset. Postmortem results were known in only four cases; many causes of death remained unexplained. Professional consensus was that seven deaths were unpreventable; elective cesarean section may have changed the outcome in eight cases. However, the pregnant women had declined this option; some were reported to be avoiding National Health Service care because of previous bad experiences. Transfer to hospital care, when it occurred, was often problematic. Care management was judged to be clinically acceptable within the parameters set by the mothers' choices.
  
  
  CONCLUSIONS
  Information about clinical processes (and outcomes) is essential if informed decisions are to be made. The women in this review had reportedly accepted the potential consequences of their high-risk situations. If reality is to match rhetoric about "patient" autonomy, such decision making in high-risk situations must be accepted.
authors.affiliation: School of Nursing & Midwifery, University of Dundee, Dundee, UK.
authors.forename: Andrew
authors.initials: A
authors.lastname: Symon
authors.forename: Clare
authors.initials: C
authors.lastname: Winter
authors.forename: Peter T
authors.initials: PT
authors.lastname: Donnan
authors.forename: Mavis
authors.initials: M
authors.lastname: Kirkham
mesh_terms: D000328:Adult; D002423:Cause of Death; D005260:Female; D005500:Follow-Up Studies; D006700:Home Childbirth / Q000401:mortality*; D006801:Humans; D015994:Incidence; D007231:Infant, Newborn; D008880:Midwifery / Q000458:organization & administration* / Q000706:statistics & numerical data*; D054238:Perinatal Mortality; D011247:Pregnancy; D018566:Pregnancy, High-Risk; D017149:Private Sector; D017009:Professional Autonomy; D013222:State Medicine / Q000458:organization & administration; D050497:Stillbirth / Q000453:epidemiology*; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult