(Scroll down for proxy activation study materials)

People have different ideas about who should make decisions when an ICU patient is too sick to communicate.  Some families want the responsibility for making big decisions, many want to share that responsibility with doctors, and some families want their doctors to make big decisions.  That's okay.  In fact, The American Thoracic Society and the Society of Critical Care Medicine - two international professional organizations representing ICU clinicians - believe that clinicians should be skilled at a wide range of decision-making approaches and should tailor the decision-making process to each family's preferences. (Kon AA, et al. Crit Care Med 2016)  When a family member wants to participate in making decisions, providing them with information about treatment options is not sufficient.  (Joseph-Williams N, et al. Int Care Med 2016)  Even with information about treatment options and expected outcomes, power imbalances between families and clinicians remain a key barrier to participation. (Joseph-Williams N, et al. BMJ 2014).  In the outpatient setting, patient activation interventions equip patients with the skills and confidence to participate in shared decision-making and manage their chronic health conditions. (Hibbard JH, Greene J.  Health Aff 2013

We wanted to know if patient activation interventions can be adapted to help the friends and family members who choose to speak for incapacitated ICU patients.  These friends and family members are called proxies.  As a first step in this process, we conducted a Phase I study in early 2016 the Medical Intensive Care Unit at Johns Hopkins Hospital, in Baltimore, Maryland.  We enrolled and interviewed 122 proxies, and 98% said the intervention was both appropriate and important.  At the same time, 44% of these same proxies said that parts of the intervention were upsetting.  In fact, most proxies who strongly agreed that parts of the intervention were upsetting also felt it was important for proxies to know about.  Proxies who found the intervention upsetting were not substantially different in age, sex, race, educational obtainment, or relation to the patient


Research Papers

Intensivist input: why is this so difficult?

Objective:  To characterize intensivist-identified barriers and facilitators to discussing post-discharge outcomes with ICU proxies. 

- Published at Annals of the American Thoracic Society

Recruiting ICU proxies in research

Objective: To evaluate a strategy for recruiting families of medical ICU patients to participate in a brief activation intervention.

— Published at PLoS ONE

De-identified data files are available from the Johns Hopkins University Data Archive Dataverse

A phase I study of proxy activation

Objective: To assess the acceptability of a brief  activation intervention for families of adult ICU patients. 

— Published at PLoS ONE

- De-identified data files are available from the Johns Hopkins University Data Archive Dataverse

 

Study Materials

We are providing the written study materials for this intervention in 3 formats.  Version 2.1 was used during the Phase I study of Proxy Activation conducted between January and May 2016. Identifying names and phone numbers have been removed from the contact section.  Version 2.1 is provided only as a reference for those reading the study manuscript.  

Version 2.4 is the most up-to-date version of this intervention.  It is provided with a Creative Commons, Attribution-NonCommercial-ShareAlike 4.0 International License.  This license permits you to modify and share the materials for non-commercial purposes as long as you give appropriate credit, provide a link to the license, and indicate if changes were made.  For example, after modifying the booklet to your clinical situation, please include the following information: 

"This work is a modified version 2.4 of the ICU Proxy Guide created by Alison E. Turnbull, DVM, MPH, PhD and the Partnership for ICU Patient and Family Engagement (PIPER) and is licensed under a Creative Commons Attiribution-NonCommercial-ShareAlike 4.0 International License.  A copy of this license is available at: https://creativecommons.org/licenses/by-nc-sa/4.0/.   The original version can be downloaded from https://www.piperscience.org/proxy-activation."

All study materials were designed to be read aloud in the context of a face-to-face discussion with a potential ICU proxy.  The impact of this material on patient care, proxy-clinician communication, and proxy mental health is currently unknown, and our Phase I study results suggest there may be important potential side effects.  We strongly encourage anyone considering a proxy activation intervention to first read about our Phase I study or contact us.  

The Microsoft Publisher version of version 2.4 can be edited and printed as a booklet. 

Version 2.1

Version 2.4 - PDF

Version 2.4 - Microsoft Publisher version