Poster with preliminary results for www.wikidecision.org project http://www.researchprotocols.org/2016/1/e24/

1. 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 affilié 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 Health
Sciences 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 difficult situations which raise questions
about 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) about
goals of care adapted to the needs of a local ICU. We identified multi-level barriers
to making end-of-life decisions in the ICU that are congruent with patients’ values
and preferences.
CONCLUSIONS We produced a DA about goals of care adapted to the local
context of a single ICU. Many steps still need to be done before its implementation
in this ICU and before scale-up to other care settings.
ABSTRACT
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.
INTRODUCTIONMETHODS
ACKNOWLEDGMENTS
We thank all participants, including the critically-ill patients
who contributed to improving our decision aid for the benefit of future patients.
RESULTS
• A context-adapted DA about goals of care was produced
with the participation of clinicians, patients, and family
members.
• DA available online at www.wikidecision.org
• Upcoming steps : video for patients, clinician training on
the subject of SDM in the ICU, evaluation of the clinical
impact of our intervention.
CONCLUSIONS
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
• Modification 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 = 10
6
2
2
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 = 15
67 (16)
8 (53)
4 (27)
13 (87)
5 (3)
12 (80)
3 (20)
More information
about alternative
options (e.g.
palliative care)
was added
Focus of the
questions on current
& acceptable
future functional
autonomy
It does !
in 100% of cases
The GO FAR rule
and Icon Array
software to illustrate
patients’ chances
of survival with
and without
CPR was
programmed
into the wiki
What will happen
to me if I refuse those
interventions ?
What are the risk
to loose my
functional
autonomy ?
Untreated
cardiac arrest
can not lead
to death...
SOLUTIONS CREATED ACCORDING TO COMMENTS
COLLECTED THROUGH PROTOTYPING
FIRST AND SECOND PAGES OF THE PAPER DA
DECISION AID CONTENT
• International Patient Decision Aid Standards
(IPDAS) criteria (20/30)
• Values clarification section
• General information about procedures
• Risks and benefits
• 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 jour
le 20 mai 2016
Outil d’aide à la décision
sur les objectifs de soins
Version destinée aux patients aptes
admis 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 après
que 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
SURVIE
À TOUT
PRIX
CONFORT
Prolonger la
vie par tous les
soins nécessaires
Prolonger
la vie par
des soins
limités
Assurer le confort
prioritairement
à prolonger
la vie
Assurer le confort
uniquement 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/Doctor
relationhsip
Microsystem
(clinical practices, team culture)
Mesosystem
(institutions, healthcare system)
Macrosystem (community)
• Lack of
knowledge
of intensive care
and interventions
that are offered
• Lack of data about
our population
• No decision aid available
• Patients transferred from
the 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 Caucasian
French Canadian population. It would need to be
culturally adapted before being used with
patients from other cultures.
LIMITATIONS
EXAMPLE OF THE GO FAR CALCULATOR FOR INDIVIDUALIZED
STATISTICS AVAILABLE ONLINE
ImagescreatedbyIconarray.com
www.wikidecision.org/comments
arianeplaisance@gmail.com
CONTACT
GRAPHIC DESIGN | depicsci@gmail.com