The representation of healthcare end users' perspectives by surrogates in healthcare decisions: a literature review

Background: The representation of end users’ perspectives in healthcare decisions requires involvement of their surrogates when the end users, i.e. certain patients, elderly people, children and people with disabilities, are unable to present their views. Aims: To review critical issues, and the advantages and disadvantages of involving surrogates in representing end users’ perspectives in healthcare decisions. Methods: A systematic review of literature published in peer‐reviewed journals from 1990 to 2005. Results: Findings show that surrogates are used widely in health care and that they are necessary to represent end users’ perspectives in healthcare decisions when the latter are unable to do so themselves. Critical issues in using surrogates include key ethical, social, cultural, legal and medico‐technological factors; ascertaining the best interest of end users; potential conflict of interest; possible biased decisions and the burden on surrogates. The key advantage of surrogate involvement in healthcare decisions is their ability to represent end users’ needs, values and wishes. The main disadvantages include potential discrepancies between the decisions and conclusions of surrogates and end users; the failure of surrogates to predict end users’ preferences accurately and the lack of certainty that useful information will be obtained through the surrogacy process. Conclusion: This systematic review has revealed that the involvement of surrogates is an additional vital way to represent end users’ perspectives in healthcare decisions where for a range of reasons their opinions are unable to be effectively ascertained. However, because of the heterogeneity of surrogates and end users, the selection of appropriate surrogates and deploying surrogate decisions require particularly careful consideration of their value in individual cases; thus, subsequent decision‐making must be reviewed on a case‐to‐case basis to seek to ensure that the best interests, needs and wishes of the end user are fully and accurately represented.