Article Text

Download PDFPDF

Narrative medicine and death in the ICU: word clouds as a visual legacy
  1. Meredith Vanstone1,
  2. Feli Toledo2,
  3. France Clarke3,4,5,
  4. Anne Boyle1,6,
  5. Mita Giacomini3,
  6. Marilyn Swinton3,
  7. Lois Saunders3,
  8. Melissa Shears3,
  9. Nicole Zytaruk3,
  10. Anne Woods1,6,
  11. Trudy Rose2,
  12. Tracey Hand-Breckenridge2,
  13. Diane Heels-Ansdell3,
  14. Shelley Anderson-White3,
  15. Robert Sheppard7 and
  16. Deborah Cook3,4
  1. 1Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada
  2. 2Spiritual Care St Joseph's Healthcare, Hamilton, Ontario, Canada
  3. 3Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
  4. 4Department of Medicine, McMaster University, Hamilton, Ontario, Canada
  5. 5Department of Critical Care, St Joseph's Healthcare, Hamilton, Ontario, Canada
  6. 6Department of Medicine, St Joseph's Healthcare, Hamilton, Ontario, Canada
  7. 7Department of Emergency Medicine, North Cypress Medical Center, Cypress, Texas, USA
  1. Correspondence to Dr Deborah Cook, Department of Critical Care, St Joseph's Healthcare Hamilton, 50 Charlton Avenue East, Hamilton, Ontario, L8N 4A6, Canada; debcook{at}mcmaster.ca

Abstract

Objective The Word Cloud is a frequent wish in the 3 Wishes Project developed to nurture peace and ease the grieving process for dying critically ill patients. The objective was to examine whether Word Clouds can act as a heuristic approach to encourage a narrative orientation to medicine. Narrative medicine is an approach which can strengthen relationships, compassion and resilience.

Design Word Clouds were created for 42 dying patients, and we interviewed 37 family members and 73 clinicians about their impact. We conducted a directed qualitative content analysis, using the 3 stages of narrative medicine (attention, representation, affiliation) to examine the narrative medicine potential of Word Clouds.

Results The elicitation of stories for the Word Cloud promotes narrative attention to the patient as a whole person. The distillation of these stories into a list of words and the prioritisation of those words for arrangement in the collage encourages a representation that did not enforce a beginning, middle or end to the story of the patient's life. Strong affiliative connections were achieved through the honouring of patients, caring for families and sharing of memories encouraged through the creation, sharing and discussion of Word Clouds.

Conclusions In the 3 Wishes Project, Word Clouds are 1 way that families and clinicians honour a dying patient. Engaging in the process of making a Word Cloud can promote a narrative orientation to medicine, forging connections, making meaning through reminiscence and leaving a legacy of a loved one. Documenting and displaying words to remember someone in death reaffirms their life.

  • critical care
  • dying
  • palliative care
  • Spiritual care
  • narrative medicine

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

Statistics from Altmetric.com

Footnotes

  • Twitter Follow Meredith Vanstone at @meredithv

  • Contributors All authors designed the study. All authors except MV and MG participated in the design and implementation of the intervention and/or data collection. MV, FT, MG, MS and DC participated in data analysis and interpretation. MV, FT, MS and DC drafted the manuscript. All authors have critically reviewed the manuscript and given approval to submit the final version.

  • Funding The Hamilton Academy of Health Sciences Organization and Canadian Intensive Care Foundation, Hamilton Canadian Tire Foundation and a Foundation Grant from the Canadian Institutes of Health Research.

  • Disclaimer The funders played no role in the design, conduct or reporting of this study.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval Hamilton Integrated Research Ethics Board in Hamilton, Ontario.

  • Provenance and peer review Not commissioned; externally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.