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Research
Patient values informing medical treatment: a pilot community and advance care planning survey
  1. S Milnes1,2,
  2. C Corke1,2,
  3. N R Orford1,2,3,
  4. M Bailey3,
  5. J Savulescu4 and
  6. D Wilkinson4,5
  1. 1 School of Medicine, Deakin University, Geelong, Victoria, Australia
  2. 2 Intensive Care Unit, University Hospital Geelong, Barwon Health, Geelong, Victoria, Australia
  3. 3 Department of Epidemiology and Preventive Medicine (DEPM), Australian and New Zealand Intensive Care Research Centre (ANZIC-RC), Monash University, Melbourne, Victoria, Australia
  4. 4 Faculty of Philosophy, Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK
  5. 5 John Radcliffe Hospital, Oxford, UK
  1. Correspondence to Sharyn Milnes, School of Medicine, Deakin University, Waurn Ponds, Victoria 3217, Australia; Sharyn.milnes{at}deakin.edu.au

Abstract

Medicine regards the prevention of death as an important priority. Yet patients may have a range of priorities of equal or greater importance. These other priorities are often not discussed or appreciated by treating doctors.

Objectives We sought to identify priorities of care for patients attending an advance care planning (ACP) clinic and among the general population, and to identify factors associated with priorities other than prolonging life.

Methods We used a locally developed survey tool ‘What Matters Most’ to identify values. Choices presented were: maintaining dignity, avoiding pain and suffering, living as long as possible, and remaining independent. Participants rated the importance of each and then selected a main priority for their doctor. Participant groups were a purposive sample of 382 lay people from the general population and 100 attendees at an ACP clinic.

Results Living as long as possible was considered to be less important than other values for ACP patients and for the general population. Only 4% of ACP patients surveyed and 2.6% of our general population sample selected ‘living as long as possible’ as their top priority for medical treatment.

Conclusions ‘Living as long as possible’ was not the most important value for ACP patients, or for a younger general population. Prioritisation of other goals appeared to be independent of extreme age or illness. When end of life treatment is being discussed with patients, priorities other than merely prolonging life should be considered.

  • Clinical decisions
  • Quality of life
  • Values
  • Communication
  • Ethics
  • Advance Care Planning

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

https://doi.org/10.1136/bmjspcare-2016-001177

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    Footnotes

    • Correction notice This article has been corrected since it published Online First. The funding statement has been added.

    • Contributors SM was involved in planning, data collection and analysis, manuscript development and revision, guarantor of overall content, submitted study. CC was involved in planning, data collection, development of figure, manuscript development and revision. JS was involved in manuscript revision. NRO was involved in data analysis and development of tables. MB was involved in statistical analysis, manuscript development and revision. DW was involved in data analysis, table development, manuscript development and revision.

    • Funding This work was supported by the Wellcome Trust (WT104848/Z/14/Z; WT106587/Z/14/Z).

    • Competing interests None declared.

    • Ethics approval Barwon Health Research Governance and Integrity Unit.

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