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Adult Children Perceptions of the Quality of Hospital Care Received by Their Advanced-Age Parents at the End of Life: A Sequential Mixed Methods Approach

  • Author / Creator
    Crandall, Jacqueline M.
  • Dying advanced-age adults (85+) are at risk of receiving suboptimal end-of-life (EOL) care in hospital, as they are often not recognized as dying. Their children may have important perspectives on quality advanced-age hospital-based EOL care. The aim of this study was to develop a theory of high-quality EOL hospital care for patients aged 85 and older admitted for non-surgical care. The objectives were to: (a) describe older people (aged 85+) who die in hospital, (b) describe the hospital services provided to older persons aged 85+ who die in hospital, and (c) explore adult children’s perceptions of the quality of hospital care provided to their parent aged 85+ during the last non-surgical admission that ended in death. The study used a mixed methods quantitative→ QUALITATIVE priority-sequence research design. Decedent demographics and hospital use in the Canadian province of Ontario were determined using data obtained from the Canadian Institute for Health Information’s (CIHI) Discharge Abstract Database. Grounded theory methodology guided the qualitative phase of the study where 15 adult children provided information about the EOL hospital care of 12 advanced-age parents. During the year 2014-2015, 13,450 advanced-age adults died in Ontario acute care hospitals, accounting for 32.7% of all hospital deaths in Ontario. Palliative care was the primary diagnosis in 21.1% of the 13,450 cases. The median length of hospital stay for advanced-age decedents was 6 days, few received life-sustaining treatments in hospital, although 12.0% died in a specialty care unit, such as an intensive care unit. In the qualitative phase, the parent’s impending death surprised many adult children. Interviews with adult children resulted in the development of four themes relating to their perceptions of quality EOL care: (a) being an adult child, (b) being an advocate, (c) receiving high (and low) quality EOL care, and (d) reacting and remembering. The third theme of receiving high (and low) quality EOL care consisted of four categories: (a) being informed vs. being left in the dark, (b) receiving compassionate care vs. being treated uncaringly, (c) being treated with respect and dignity vs. being devalued as a person, and (d) receiving optimal care and comfort vs. falling through the cracks. The findings indicate quality improvement measures are needed to deliver consistent effective, patient-centered EOL care. The devised substantive theory of quality EOL hospital care for advanced-age adults provides a useful framework to guide hospital-based EOL care.

  • Subjects / Keywords
  • Graduation date
    Spring 2019
  • Type of Item
    Thesis
  • Degree
    Doctor of Philosophy
  • DOI
    https://doi.org/10.7939/r3-xhfn-w603
  • License
    Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.