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Surrogate decision makers’ attitudes towards research decision making for critically ill patients

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Abstract

Purpose

To examine the attitudes and preferences of surrogate decision makers (SDMs) regarding their involvement in the consent to research process for ICU patients.

Methods

We presented 136 SDMs of critically ill patients in five ICUs with four hypothetical research scenarios: baseline interventional study of a placebo controlled RCT; study with higher risk of treatment complication; study comparing two accepted treatments; study with shorter enrolment window. For each we asked SDMs if they would want to be involved in the consent to research decision, and to rate the acceptability of their comfort with, and their sense of burden with their involvement. Participants were screened for symptoms of anxiety and depression using the Hospital Anxiety and Depression Scale.

Results

For the baseline scenario, most SDMs wished to be involved in research decision making (90 %; 95 % CI 84–95 %); responses varied little across study permutations. The majority considered their involvement to be acceptable (85 %; 95 % CI 77–90 %), whereas, a small minority rated it as being unacceptable (2 %; 95 % CI 1–6 %). Many were comfortable with being involved (50 %; 95 % CI 41–59 %), but the number decreased when risk of harm was higher (34 %; 95 % CI 26–43 %) or enrolment window was shorter (41 %; 95 % CI 33–50 %). A majority (62 %) reported symptoms of anxiety and many (38 %) had symptoms of depression.

Conclusion

Most of the interviewed SDMs wished to be involved in research decision making for critically ill and incapable loved ones. Variability existed, however, in their desire to be involved when decisions were time-sensitive or perceived risk was greater.

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Acknowledgments

We thank Amardeep Bali, Mardi Baum, Joel Elman, and Stephanie Go for their help with screening of patients and data collection. Damon Scales and Ruxandra Pinto had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Conflicts of interest

Drs. Ferguson and Scales are supported by New Investigator Awards, Dr. Friedrich by a Clinician Scientist Award, and Ms. Smith by a Doctoral Research Award from the Canadian Institutes of Health Research (CIHR) (Ottawa, Canada). Dr. Cook is a Canada Research Chair of the CIHR.

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Authors and Affiliations

  1. Internal Medicine Programme, Department of Medicine, Faculty of Medicine, University of Toronto, Toronto, ON, Canada

    Kali A. Barrett

  2. Interdepartmental Division of Critical Care Medicine, University of Toronto, Toronto, ON, Canada

    Kali A. Barrett, Niall D. Ferguson, Jan O. Friedrich & Damon C. Scales

  3. Division of Respirology, Department of Medicine, University Health Network, Mt Sinai Hospital, University of Toronto, 600 University Avenue, Suite 18-206, Toronto, ON, Canada

    Niall D. Ferguson

  4. Faculty of Emergency Medicine, University of British Columbia, Vancouver, BC, Canada

    Valerie Athaide

  5. Departments of Medicine, Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada

    Deborah J. Cook & Ellen McDonald

  6. Department of Critical Care Medicine, St. Joseph’s Hospital, Hamilton, ON, Canada

    Deborah J. Cook & Ellen McDonald

  7. Critical Care and Medicine Departments, The Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, ON, Canada

    Jan O. Friedrich & Orla M. Smith

  8. Department of Critical Care Medicine, Sunnybrook Health Science Centre, Toronto, ON, Canada

    Ruxandra Pinto & Damon C. Scales

  9. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada

    Orla M. Smith

  10. Undergraduate Medical Education MD Programme, Faculty of Medicine, University of Toronto, Toronto, ON, Canada

    James Stevenson

Authors
  1. Kali A. Barrett
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  2. Niall D. Ferguson
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  3. Valerie Athaide
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  4. Deborah J. Cook
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  5. Jan O. Friedrich
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  6. Ellen McDonald
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  7. Ruxandra Pinto
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  8. Orla M. Smith
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  9. James Stevenson
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  10. Damon C. Scales
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Corresponding author

Correspondence to Niall D. Ferguson.

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Barrett, K.A., Ferguson, N.D., Athaide, V. et al. Surrogate decision makers’ attitudes towards research decision making for critically ill patients. Intensive Care Med 38, 1616–1623 (2012). https://doi.org/10.1007/s00134-012-2625-x

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  • DOI: https://doi.org/10.1007/s00134-012-2625-x

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