Plaisance A, BSc1,2 ; Witteman HO, PhD3,4,9 ; Heyland DK, PhD5,6 ; Ebell MH, MD, MS7 ; Dupuis A, MA2,8 ; Lavoie-Bérard CA, MD2 ; Légaré F, MD, PhD4,9 ; Archambault PM, MD, MSc, FRCPC2,4,9

1 Département de médecine sociale et préventive, Faculté de médecine, Université Laval, Québec, QC ; 2 Centre de recherche du Centre hospitalier a�lié universitaire de l’Hôtel-Dieu de Lévis, Lévis, QC ; 3 Vice-décanat à la pédagogie et au développement professionnel continu, Faculté de médecine,Université Laval, Québec, QC ; 4 Axe Santé des populations et pratiques optimales en santé, Centre de recherche du CHU de Québec, Québec, QC ; 5 Clinical Evaluation Research Unit, Kingston General Hospital, Kingston, ON ; 6 Department of Medicine, Queen’s University, Kingston, ON ; 7 HealthSciences Campus, University of Georgia, Athens, GA ; 8 Département d’information et de communication, Faculté des lettres et des sciences humaines, Université Laval, Québec, QC ; 9 Département de médecine familiale et médecine d’urgence, Faculté de médecine, Université Laval, Québec, QC.

DEVELOPMENT OF A CONTEXT-ADAPTED DECISION AID FOR GOALS OF CARE

INVOLVING ICU PATIENTS' AND HEALTH PROFESSIONALS' PARTICIPATION

INTRODUCTION Intensivists face di�cult situations which raise questionsabout the informed nature of decision making about life-sustaining therapies.

METHODS Ethnography and user-centered design.

RESULTS We created a novel paper and wiki-based decision aid (DA) aboutgoals of care adapted to the needs of a local ICU. We identi�ed multi-level barriersto making end-of-life decisions in the ICU that are congruent with patients’ valuesand preferences.

CONCLUSIONS We produced a DA about goals of care adapted to the localcontext of a single ICU. Many steps still need to be done before its implementationin this ICU and before scale-up to other care settings.A

BSTR

ACT

BACKGROUND • Many frail elderly are being admitted to ICUs. Upon admission, they need to clarify their goals of care. • Inability to engage patients in discussions about their goals of care can lead to the use of aggressive life-sustaining therapies. • Shared decision-making (SDM) can improve congruence of decision making with patients’ values and decreases overuse.

OBJECTIVES • To identify patients’ and clinicians’ needs for end-of-life decisions that are congruent with patients’ values and preferences (e.g. CPR or no CPR) • To adapt an existing DA to the context of a single ICU.IN

TRO

DU

CTIO

NM

ETH

OD

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ACKNOWLEDGMENTSWe thank all participants, including the critically-ill patientswho contributed to improving our decision aid for the bene�t of future patients.

RESULTS

• A context-adapted DA about goals of care was producedwith the participation of clinicians, patients, and familymembers.

• DA available online at www.wikidecision.org

• Upcoming steps : video for patients, clinician training onthe subject of SDM in the ICU, evaluation of the clinicalimpact of our intervention.CO

NCL

USI

ON

S

PREPARATION • 3 weeks of ethnographic information of daily interactions between patients, families, intensivists and other allied health professionals • 4 semi-structured individual interviews with intensivists • 5 observations of patient-intensivist discussions about goals of care • Content analysis

1

2

3

DEVELOPMENT OF THE WIKI & ADAPTATION OF THE DA • Creation of www.wikidecision.org • Translation and adaptation of a DA about CPR • Translation and integration of the Good Outcome Following Attempted Resuscitation (GO FAR) score to predict neurologically intact survival after in-hospital cardiopulmonary resuscitation into the wiki-based DA

RAPID PROTOTYPING • 3 cycles of rapid prototyping (5 dyads by cycle, 15 participants in total) • Observations of prototype use with a structured observation grid • Short interviews with patients and intensivists and content analysis • Modi�cation of the DA prototype in response to the comments addressed prior to the next cycle in each iteration of the prototype

MEDICAL STAFF Intensivists

Medical residents Nurses

N = 10622

PATIENTS Age mean (SD) Women, N (%)

High school education not completed, N (%) Medical reason for admission, N (%)

Length of stay in the ICU (days), mean (SD) Catholic faith (practicing or not), N (%)

Mortality post-3 months

N = 1567 (16)8 (53)4 (27)13 (87)5 (3)12 (80)3 (20)

More informationabout alternative

options (e.g. palliative care)

was added

Focus of thequestions on current

& acceptablefuture functional

autonomy

It does !in 100% of cases

The GO FAR ruleand Icon Array

software to illustratepatients’ chances

of survival withand without

CPR wasprogrammedinto the wiki

What will happen to me if I refuse those

interventions ?

What are the riskto loose my

functionalautonomy ?

Untreated cardiac arrest can not lead to death...

SOLUTIONS CREATED ACCORDING TO COMMENTSCOLLECTED THROUGH PROTOTYPING

FIRST AND SECOND PAGES OF THE PAPER DA

DECISION AID CONTENT

• International Patient Decision Aid Standards (IPDAS) criteria (20/30)• Values clari�cation section• General information about procedures• Risks and bene�ts• Population-level statistics• Deliberation section• Online only : GO FAR calculator for individualized statistics linked to Icon Array

Cet outil a été produit grâce à la collaboration de

... et de patients admis à l’Unité des soins intensifs de l’Hôtel-Dieu de Lévis

et de leurs proches.

Dernière mise à jourle 20 mai 2016

Outil d’aide à la décisionsur les objectifs de soins

Version destinée aux patients aptesadmis à l’unité des soins intensifs

de l’Hôtel-Dieu de Lévis

Introduction

Lors d’une hospitalisation, l’équipe soi-

gnante discutera avec vous et vos proches

corresponde à vos objectifs de soins.

Il sera plus particulièrement question de vos

valeurs et de votre niveau d’autonomie actuel

et de deux interventions :

la réanimation cardiorespiratoire (RCR)

la ventilation mécanique

Ce document a été conçu pour vous aider

à prendre une décision éclairée à ce sujet.

2

Que se passera-t-il aprèsque j’ai discuté de mes objectifs de soins ?

Vos objectifs de soins seront inscrits à votre

dossier et votre plan de traitement sera

ajusté en conséquence.

Si vous changez d’idée, faites-le savoir

à un membre de l’équipe.

Si vous avez des questions ou des pré-

occupations à propos de l’information

fournie dans cette brochure, sentez-vous à l’aise

d’en discuter avec l’équipe soignante.

11

SURVIEÀ TOUT

PRIX

CONFORT

Prolonger lavie par tous les

soins nécessaires

Prolongerla vie pardes soins

limités

Assurer le confortprioritairement

à prolongerla vie

Assurer le confortuniquement sans

viser à prolonger la vie

BARRIERS

Multi-level barriers leading to an end-of-life in the ICU that is incongruent with patients’ values and preferences

Individual

Patient/Doctorrelationhsip

Microsystem(clinical practices, team culture)

Mesosystem(institutions, healthcare system)

Macrosystem (community)

• Lack ofknowledge

of intensive careand interventionsthat are o�ered

• Lack of data aboutour population

• No decision aid available

• Patients transferred fromthe ED to the ICU without

having discussed goals of care

• No centralized patient health record• Medical doctor fee-per-service system

• Healthcare system bias towards keeping people alive

• The DA could not address all needs(video explanation, better information

about how non-survivors die)• The DA is adapted to the local context

of an ICU serving an aging CaucasianFrench Canadian population. It would need to be

culturally adapted before being used withpatients from other cultures.

LIMITATIONS

EXAMPLE OF THE GO FAR CALCULATOR FOR INDIVIDUALIZEDSTATISTICS AVAILABLE ONLINE

Imag

es c

reat

ed b

y Ic

onar

ray.

com

www.wikidecision.org/comments

arianeplaisance@gmail.com

CONTACT

GRAPHIC DESIGN | depicsci@gmail.com