Article Text

PDF
Paper
How do clinicians prepare family members for the role of surrogate decision-maker?
  1. Thomas V Cunningham1,
  2. Leslie P Scheunemann2,3,
  3. Robert M Arnold4,5,6,
  4. Douglas White6,7
  1. 1Department of Bioethics, Kaiser Permanente West Los Angeles Medical Center, Los Angeles, California, USA
  2. 2Division of Geriatrics, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  3. 3Division of Pulmonary, Allergy, and Critical Care Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  4. 4Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  5. 5Palliative and Supportive Institute, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA
  6. 6Center for Bioethics and Health Law, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  7. 7Program on Ethics and Decision Making in Critical Illness, Clinical Research, Investigation and Systems Modeling of Acute Illness (CRISMA) Center, University of Pittsburgh, Pittsburgh, Pennsylvania, USA
  1. Correspondence to Dr Thomas V Cunningham, Department of Bioethics, Kaiser Permanente West Los Angeles Medical Center, 6041 Cadillac Ave, Los Angeles, CA 90034, USA; thomas.v.cunningham{at}kp.org

Abstract

Purpose Although surrogate decision-making (SDM) is prevalent in intensive care units (ICUs) and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate.

Subjects and methods We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members.

Results Clinicians made at least one statement about how to perform the surrogate role in 24 (34%) conferences (mean of 0.83 statements per conference (1.77; range 0–9)). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM (24% of conferences); counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that (14% of conferences); and counselling surrogates to make decisions based on the family’s values (8% of conferences).

Conclusions Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress.

  • decision making
  • end-of-life care
  • clinical ethics

Statistics from Altmetric.com

Footnotes

  • Contributors Data were collected at the University of California at San Francisco (DW). Development of the framework occurred at the University of North Carolina at Chapel (LS), the University of Pittsburgh (DW and RA) and the University of Arkansas for Medical Sciences (TC). Transcript analysis and statistical analysis were performed at the University of Pittsburgh (LS and TC) and the University of Arkansas for Medical Sciences (TC). Drafting of the manuscript was performed at the University of Pittsburgh (DW, RA and LS) and the University of Arkansas for Medical Sciences (TC).

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval IRB.

  • 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.