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Revisiting ‘awareness contexts’ in the 21st century hospital: How fragmented and specialized care shape patients' Awareness of Dying

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  • Stacey, Clare L.
  • Pai, Manacy
  • Novisky, Meghan A.
  • Radwany, Steven M.

Abstract

In 1965, Glaser and Strauss (1965) offered the concept of “awareness contexts” to explain what patients in hospitals do or don't know about their death trajectories. Awareness ranges from closed (where patients are completely unaware and family and providers protect “the secret”) to open (where all parties communicate openly and honestly). While closed awareness was the norm in 1960s, open awareness is now considered standard practice in US, a reflection of mounting evidence that patients, families, and providers benefit from clear and honest communication at end of life (Seale et al., 1997; Wright et al., 2008). Despite the known benefits of open awareness, many terminal patients remain unaware or confused about their prognoses (Chen et al., 2017). This paper asks why, in an era of open awareness, are patients and families uncertain about dying? To answer this question, we focus on an aspect of Glaser and Strauss's theory that remains relatively understudied by researchers, namely the role of institutional and organizational realities in shaping awareness contexts. Based on interviews with 43 family members of deceased patients who died at General Hospital in the Midwestern US, we argue that two related conditions in hospitals—the increased specialization of medical professionals and the fragmentation of patient care—serve as important context for the death awareness of patients and families.

Suggested Citation

  • Stacey, Clare L. & Pai, Manacy & Novisky, Meghan A. & Radwany, Steven M., 2019. "Revisiting ‘awareness contexts’ in the 21st century hospital: How fragmented and specialized care shape patients' Awareness of Dying," Social Science & Medicine, Elsevier, vol. 220(C), pages 212-218.
    • Handle: RePEc:eee:socmed:v:220:y:2019:i:c:p:212-218
    DOI: 10.1016/j.socscimed.2018.10.028
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    References listed on IDEAS

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    1. Miyaji, Naoko T., 1993. "The power of compassion: Truth-telling among American doctors in the care of dying patients," Social Science & Medicine, Elsevier, vol. 36(3), pages 249-264, February.
    2. McPherson, C. J. & Addington-Hall, J. M., 2003. "Judging the quality of care at the end of life: can proxies provide reliable information?," Social Science & Medicine, Elsevier, vol. 56(1), pages 95-109, January.
    3. Seale, Clive & Addington-Hall, Julia & McCarthy, Mark, 1997. "Awareness of dying: Prevalence, causes and consequences," Social Science & Medicine, Elsevier, vol. 45(3), pages 477-484, August.
    4. Philip C Higgins & Holly G Prigerson, 2013. "Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Scale: The Caregiver's Perception of Patient Care Near Death," PLOS ONE, Public Library of Science, vol. 8(6), pages 1-10, June.
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    Cited by:

    1. Lang, Alexander & Frankus, Elisabeth & Heimerl, Katharina, 2022. "The perspective of professional caregivers working in generalist palliative care on ‘good dying’: An integrative review," Social Science & Medicine, Elsevier, vol. 293(C).

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