CONTEXT: Survival of infants born at the limit of viability varies between high-income countries. OBJECTIVE: To summarize the prognosis of survival and risk of impairment for infants born at 22 + 0/7 weeks’ to 27 + 6/7 weeks’ gestational age (GA) in high-income countries. DATA SOURCES: We searched 9 databases for cohort studies published between 2000 and 2017 in which researchers reported on survival or neurodevelopmental outcomes. STUDY SELECTION: GA was based on ultrasound results, the last menstrual period, or a combination of both, and neurodevelopmental outcomes were measured by using the Bayley Scales of Infant Development II or III at 18 to 36 months of age. DATA EXTRACTION: Two reviewers independently extracted data and assessed the risk of bias and quality of evidence. RESULTS: Sixty-five studies were included. Mean survival rates increased from near 0% of all births, 7.3% of live births, and 24.1% of infants admitted to intensive care at 22 weeks’ GA to 82.1%, 90.1%, and 90.2% at 27 weeks’ GA, respectively. For the survivors, the rates of severe impairment decreased from 36.3% to 19.1% for 22 to 24 weeks’ GA and from 14.0% to 4.2% for 25 to 27 weeks’ GA. The mean chance of survival without impairment for infants born alive increased from 1.2% to 9.3% for 22 to 24 weeks’ GA and from 40.6% to 64.2% for 25 to 27 weeks’ GA. LIMITATIONS: The confidence in these estimates ranged from high to very low. CONCLUSIONS: Survival without impairment was substantially lower for children born at <25 weeks’ GA than for those born later.
Background Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the ‘turning point’). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families. Methods The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care. Results In the development of the turning point, the texts usually shift from statements about the patient’s clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient’s voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient’s opinion. None of the physicians’ notes provided a detailed account of patient attitudes, wishes, and experiences. Conclusion In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The ‘reality’ behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life.
Medicinkliniken Centralsjukhuset Karlstad Han har bidratt med å definere problemstillingen for den systematiske oversikten, tolke resultater, lese og gi innspill på manuskriptet. Brynjar Fure er ph.d., spesialist i geriatri, i indremedisin og i nevrologi. Han er overlege og professor II. Forfatter har fylt ut ICMJE-skjemaet og oppgir ingen interessekonflikter.
In this study, we analyse the electronic patient record (EPR) as a genre and investigate how a death is documented as part of the EPR, that is, what kind of textual practices can be found, and how they can be understood based on extracts from 42 EPRs from medical wards in Norwegian hospitals. Following from our analysis, we see four distinct patterns in the documentation of patient death: a) registering the bare minimum of information, b) registering a body stopped working, c) documenting dying quietly and placing it in peaceful surroundings, and d) highlighting the accompanied death. The textual practices of documenting the transition to death in the EPR make death appear manageable and sanitised, depicting death as either uneventful or good. While the EPR genre is steeped in biomedical language, other discourses relating to death can be seen as ways to accommodate the ideal of a dignified death.
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