Joy at the End of Life: An Interpretive Description

• Author / Creator

  Cottrell, Laura, M.

• Background: Current demographic trends indicate that the annual number of expected deaths in Canada will double between 2005 and 2036, thus demanding further knowledge development to ensure quality end of life care in the future for an increasing part of the population. End of life care has evolved over time and continues to adapt to societal changes globally. In the western world, the current end of life care context is in flux, and the process of dying is becoming increasingly marginalized and viewed as a predominantly negative experience, both within the broad social and palliative care discourses. Positive concepts, such as joy, are understudied and often sidelined in the increasingly medicalized context of palliative and end of life care. To reclaim a more positive view of dying, and to improve the quality of life for individuals at the end of life, there is a need to forefront positive concepts, such as joy, in the context of end of life care. Purpose: The purpose of this dissertation was to explore the concept of joy in the context of the end of life and, more specifically, to better understand the experience of joy in adults with advanced cancer in hospice.Methods: The dissertation consists of four related and sequential papers: (1) a concept analysis of joy and happiness to determine the differences between the two concepts and to provide an initial definition of joy; (2) an integrative literature review of the "good death" in western society to explore how the dying process is represented and enacted in contemporary society and within the contemporary palliative care discourse; (3) a methods paper describing the role of transcripts in an interpretive description study; and (4) a findings paper describing a qualitative interpretive description study to understand the experience of joy from the perspective of adults with advanced cancer in the context of hospice.Findings and Conclusions: Dying in contemporary western society is portrayed as a predominantly negative process in both social and palliative care discourses. A contemporary "good death" ideally occurs without a dying process, as dying becomes less visible, more undesirable, in social discourse. But dying is undeniably an important part of living and as such, exploring and exposing positive dying experiences may help to reframe attitudes to dying and improve quality of life by improving end of life care. Although some research attention is given to positive concepts in palliative care, more emphasis needs to be given to concepts such as hope and joy, to reframe and reclaim the dying process.In this qualitative study, seven persons with advanced cancer residing in a hospice in an urban western Canadian city and six nurses were interviewed to explore the experience of joy in this population. Findings indicated that participants not only experienced joy at or near the end of life, but they valued their moments of joy, as these moments of joy made them feel connected, exhilarated, and alive. Participants described the experience of joy as a sudden "moment in time in which everything comes together" and form which comes strength, freedom, and the feeling of being alive. Participants associated joy with an intense feeling of deep connection. The findings of this study suggest that experiencing moments of joy may help patients feel cared for, alive, and connected to themselves and to others. Moments of joy may help those individuals with advanced illness who experience dislocation and alienation associated with liminality; joy may provide the connection that protects from despair and alienation and fosters healing. Based on my findings, I would like to encourage nurses who work in end of life settings or who study end of life issues to focus on providing more opportunities for individuals to experience joy.

• Subjects / Keywords

  • palliative care
  • end of life care
  • joy

• Graduation date

  Fall 2018

• Type of Item

  Thesis

• Degree

  Doctor of Philosophy

• DOI

  https://doi.org/10.7939/R38P5VS0S

• 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.