user centered design and rapid prototyping supported by a wiki to develop a decision aid for cpr and...
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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
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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
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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
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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
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