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Discordance between patients' stated values and treatment preferences for end-of-life care: results of a multicentre survey
  1. Daren K Heyland1,2,3,
  2. Rebecca Heyland3,
  3. Peter Dodek4,
  4. John J You5,
  5. Tasnim Sinuff6,7,
  6. Tim Hiebert8,
  7. Xuran Jiang3 and
  8. Andrew G Day3
  9. for the ACCEPT Study Team and the Canadian Researchers at the End of Life Network (CARENET)
  1. 1Department of Critical Care Medicine, Kingston General Hospital, Kingston, Ontario, Canada
  2. 2Department of Public Health Sciences, Queen's University, Kingston, Ontario, Canada
  3. 3Clinical Evaluation Research Unit, Kingston General Hospital, Kingston, Ontario, Canada
  4. 4Centre for Health Evaluation and Outcome Sciences and Division of Critical Care Medicine, St. Paul's Hospital and University of British Columbia, Vancouver, British Columbia, Canada
  5. 5Departments of Medicine, and of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada
  6. 6Department of Critical Care Medicine, Sunnybrook Hospital and Sunnybrook Research Institute, Toronto, Ontario, Canada
  7. 7Interdepartmental Division of Critical Care Medicine and Department of Medicine, University of Toronto, Toronto, Ontario, Canada
  8. 8Winnipeg Regional Health Authority Palliative Care Program, Winnipeg, Manitoba, Canada
  1. Correspondence to Dr Daren K Heyland, Department of Critical Care Medicine, Kingston General Hospital, Angada 4, Kingston, Ontario, Canada K7L 2V7; dkh2{at}queensu.ca

Abstract

Background Medical orders for the use of life-supports should be informed by patients' values and treatment preferences. The purpose of this study was to explore the internal consistency of patients' (or their family members') stated values, and the relationship between these values and expressed preferences.

Methods We conducted a prospective study in 12 acute care hospitals in Canada. We administered a questionnaire to elderly patients and their family members about their values related to end-of-life (EOL) care, treatment preferences and decisional conflict.

Results Of 513 patients and 366 family members approached, 278 patients (54%) and 225 family members (61%) consented to participate. Participants' most important stated values were to be comfortable and suffer as little as possible, to have more time with family, to avoid being attached to machines and tubes and that death not be prolonged. The least important stated value was that life be preserved. Based on prespecified expected associations between the various values measured, there were inconsistencies in participants' expressed value statements. With few exceptions, participants' expressed values were not associated with expected corresponding treatment preferences. Of the 109 (40%) patients and 95 (42%) family members who had made decisions about use of life-supports, 68 (56%) patients and 60 (59%) family members had decisional conflict.

Conclusions Decision-making regarding medical treatments at the EOL is inadequate. To reduce decisional conflict, patients and their families need more support to clarify their values and ensure that their preferences are grounded in adequate understanding of their illness and treatment options.

Trial registration number NCT01362855.

  • Communication
  • Ethics
  • Clinical decisions
  • Hospital care
  • Received 30 October 2015.
  • Revision received 30 August 2016.
  • Accepted 21 September 2016.

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  • Received 30 October 2015.
  • Revision received 30 August 2016.
  • Accepted 21 September 2016.
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Footnotes

  • Collaborators ACCEPT Study Team and the Canadian Researchers at the End of Life Network (CARENET).

  • Contributors DKH and AGD have had full access to all of the data in the study, and take responsibility for the integrity of the data and the accuracy of the data analysis. All authors contributed to the conception and design of the study and to the drafting of the article. AGD and XJ were responsible for data analysis. All authors contributed to the analysis and interpretation of data, revised the article for important intellectual content, and gave final approval of the version to be published. PD and JJY were also involved in data collection.

  • Funding This study was supported by funding from the Canadian Institutes of Health Research, The Michael Smith Health Services Research Foundation in British Columbia, Alberta Innovates and the AFP Innovation Fund in Ontario. The funders played no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; and in the preparation, review or approval of the manuscript.

  • Competing interests None declared.

  • Ethics approval Research Ethics Boards of all participating institutions.

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

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