Posttraumatic stress disorder in people who use drugs: syringe services program utilization, treatment need, and preferences for onsite mental health care.

BACKGROUND: Syringe services programs (SSPs) are critical healthcare access points for people with opioid use disorder (OUD) who face treatment utilization barriers. Co-locating care for common psychiatric comorbidities, like posttraumatic stress disorder (PTSD), at SSPs may reduce harms and enhance the health of individuals with OUD. To guide the development of onsite psychiatric care at SSPs, we collected quantitative survey data on the prevalence of PTSD, drug use patterns, treatment experiences associated with a probable PTSD diagnosis, and attitudes regarding onsite PTSD care in a convenience sample of registered SSP clients in New York City. METHODS: Study participants were administered the PTSD Checklist for the DSM-5 (PCL-5) and asked about sociodemographic characteristics, current drug use, OUD and PTSD treatment histories, and desire for future SSP services using a structured interview. Probable PTSD diagnosis was defined as a PCL-5 score ≥ 31. RESULTS: Of the 139 participants surveyed, 138 experienced at least one potentially traumatic event and were included in the present analysis. The sample was primarily male (n = 108, 78.3%), of Hispanic or Latinx ethnicity (n = 76, 55.1%), and middle-aged (M = 45.0 years, SD = 10.6). The mean PCL-5 score was 35.2 (SD = 21.0) and 79 participants (57.2%) had a probable PTSD diagnosis. We documented frequent SSP utilization, significant unmet PTSD treatment need, and high interest in onsite PTSD treatment. CONCLUSIONS: Study findings point to the ubiquity of PTSD in people with OUD who visit SSPs, large gaps in PTSD care, and the potential for harm reduction settings like SSPs to reach people underserved by the healthcare system who have co-occurring OUD and PTSD.

What are the views of Quebec and Ontario citizens on the tiebreaker criteria for prioritizing access to adult critical care in the extreme context of a COVID-19 pandemic?

BACKGROUND: The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario's protocols were presented to the public in a democratic deliberation during the summer of 2022. OBJECTIVES: (1) To explore the perspectives of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. METHODS: This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. RESULTS: A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value - a less acceptable tiebreaker. CONCLUSION: Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria.

Characterizing Canadian Social Workers Willing to Be Involved in Medical Assistance in Dying for Persons Lacking Decisional Capacity.

Medical assistance in dying (MAID) is available in Canada for competent persons meeting the legal requirements. Extending access to persons lacking decisional capacity is being considered. Social workers may be called upon to accompany these persons through the MAID process. As part of a larger survey, we asked social workers from Quebec whether they would be willing to be involved should advance requests for MAID be legalized. Of the 367 respondents, 291 replied that they would. Using multivariable logistic regression, we identified characteristics that distinguish them from the other social workers surveyed: importance of religious or spiritual beliefs, being born in Canada, having received assisted-death requests from families, professional experiences with MAID, and dreading the prospect of participating in MAID for persons lacking decisional capacity. These findings underline the need for educational interventions that would increase social workers' confidence in providing high-quality care to clients who opt for MAID.

Development of a bilingual interdisciplinary scale assessing self-efficacy for participating in Medical Assistance in Dying.

Medical Assistance in Dying (MAiD) is a complex process involving the person seeking care and their relatives. MAiD involves physical, psychosocial and spiritual needs, and consequently the involvement of an interdisciplinary team is beneficial. Therefore, updating the knowledge and skills of healthcare and social services professionals is critical. An interdisciplinary team from Laval University (Quebec, Canada) has developed a continuous training program for all health care and social services professionals who could be involved in the care of persons who request MAiD and their loved ones. It is crucial to assess whether the objectives of the continuous training program are being met, especially since this new training addresses several complex issues (legal, ethical, and clinical). Bandura's self-efficacy theory has been widely used to develop scales for assessing the impact of training programs and identifying knowledge gaps. Bandura's theory states that feeling secure in one's self-efficacy leads to self-determined motivation. Although there are various scales intended to measure self-efficacy in palliative care, none include self-efficacy for participating in the process surrounding MAiD. As a result, we aim to create a bilingual (English-French) interdisciplinary scale to assess self-efficacy for participating in the process surrounding MAiD. The scale will allow decision-makers and researchers to identify current knowledge gaps. It will also be useful for assessing the impact of current and future training programs addressing this end-of-life practice. In this work in progress, we briefly introduce the training program and the future steps in the development and validation of the scale.

L'aide médicale à mourir (AMM) est un processus complexe impliquant la personne qui demande le soin et ses proches. L'AMM implique des besoins physiques, psychosociaux et spirituels. Par conséquent, l'implication d'une équipe interdisciplinaire est bénéfique et la mise à niveau des connaissances et des compétences des professionnel.es est essentielle. Une équipe interdisciplinaire de l'Université Laval (Québec, Canada) a développé un programme de formation continue destiné aux professionnelles de la santé et des services sociaux susceptible d'être impliqué es dans ls soins et services des personnes qui demandent l'AMM et de leurs proches. Il est crucial d'évaluer si les objectifs du programme de formation continue sont atteints, d'autant plus que cette nouvelle formation aborde plusieurs questions complexes (juridiques, éthiques et cliniques). La théorie du sentiment d'auto-efficacité de Bandura a été largement utilisée pour développer des échelles permettant d'évaluer l'impact des programmes de formation et d'identifier les lacunes en matière de connaissances. Cette théorie stipule que le fait de se sentir sûre de son efficacité personnelle conduit à une motivation intrinsèque à accomplir le comportement visé. Bien qu'il existe plusieurs échelles destinées à mesurer l'auto-efficacité dans le domaine des soins palliatifs, aucune n'inclut l'auto-efficacité pour la participation au processus entourant l'AMM. Par conséquent, nous développons une échelle interdisciplinaire bilingue (anglais-français) pour évaluer l'auto-efficacité à participer au processus entourant l'AMM. L'échelle permettra aux décideuses, décideurs et aux chercheuses et chercheurs d'identifier les lacunes actuelles en matière de connaissances. Elle sera également utile pour évaluer l'impact des programmes de formation actuels et futurs portant sur cette pratique de fin de vie. Dans cet article, nous présentons brièvement le programme de formation et les étapes futures du développement et de la validation de l'échelle.

Social workers' experiences with medical assistance in dying: Survey findings from Quebec, Canada.

As part of a larger survey, we asked social workers whether they had been involved in medical assistance in dying (MAID) so far. Of the 367 survey participants, 141 reported that they had. These were invited to describe their roles, needs, and sense of competence, focusing on their last MAID experience. Roles were diversified, beginning before and extending beyond the provision of MAID. Nearly 60% needed training on MAID. Perceived competence was lower among those lacking training. Findings point to educational needs that must be addressed to ensure the quality of end-of-life care and the well-being of social workers who engage in MAID.

Trajectories of health-related quality of life and their predictors in adult COVID-19 survivors: A longitudinal analysis of the Biobanque Québécoise de la COVID-19 (BQC-19).

PURPOSE: A significant number of people will experience prolonged symptoms after COVID-19 infection that will greatly impact functional capacity and quality of life. The aim of this study was to identify trajectories of health-related quality of life (HRQOL) and their predictors among adults diagnosed with COVID-19. METHODS: This is a retrospective analysis of an ongoing prospective cohort study (BQC-19) including adults (≥18y) recruited from April 2020 to March 2022. Our primary outcome is HRQOL using the EQ-5D-5L scale. Sociodemographic, acute disease severity, vaccination status, fatigue, and functional status at onset of the disease were considered as potential predictors. The latent class mixed model was used to identify the trajectories over an 18-month period in the cohort as a whole, as well as in the inpatient and outpatient subgroups. Multivariable and univariable regressions models were undertaken to detect predictors of decline. RESULTS: 2163 participants were included. Thirteen percent of the outpatient subgroup (2 classes) and 28% in the inpatient subgroup (3 classes) experienced a more significant decline in HRQOL over time than the rest of the participants. Among all patients, age, sex, disease severity and fatigue, measured on the first assessment visit or on the first day after hospital admission (multivariable models), were identified as the most important predictors of HRQOL decline. Each unit increase in the SARC-F and CFS scores increase the likelihood of belonging to the declining trajectory (univariable models). CONCLUSION: Although to different degrees, similar factors explain the decline in HRQOL over time among the overall population, people who have been hospitalized or not. Clinical functional capacity scales could help to determine the risk of HRQOL decline.

Which has more influence on a family's assessment of the quality of dying of their long-term care resident with dementia: Frequency of symptoms or quality of communication with healthcare team?

OBJECTIVE: Symptoms present at the end of life and the quality of communication with the healthcare team have both been shown to impact family assessments of the quality of dying of their loved one with dementia. However, the relative contributions of these two factors to family assessments have not yet been investigated. To address this knowledge gap, we explored which of these two factors has more influence on family assessments of the quality of dying of long-term care (LTC) residents with dementia. METHOD: This is a secondary analysis of a mortality follow-back study. Ninety-four family members of LTC residents who had died with dementia assessed the quality of dying (very good or not very good), the frequency of symptoms, and the quality of communication with the healthcare team using a self-administered questionnaire mailed 1 month after the resident's death. Logistic regression analyses were performed to determine the relative contributions of the two independent variables of primary interest (frequency of symptoms and quality of communication) to the families' assessments of the quality of dying. RESULTS: Multivariate analyses revealed that the quality of communication with the healthcare team was closely linked to the quality of dying (p = 0.009, OR = 1.34, 95% CI = 1.09-1.65), whereas the frequency of symptoms was not (p = 0.142, OR = 1.05, 95% CI = 0.98-1.11) after controlling for potential confounders. SIGNIFICANCE OF RESULTS: Our findings show that healthcare providers' ability to engage in the end-of-life conversations with families outweighs the frequency of symptoms in family assessments of the quality of dying of their relative with dementia. Enhancing healthcare providers' ability to communicate with families about the end-of-life care could improve families' perceptions of the quality of dying of their relative with dementia and, consequently, ease their grieving process.

Social Workers' Attitudes Toward Medical Assistance in Dying for Persons With Dementia: Findings From a Survey Conducted in Quebec, Canada.

Canada has legalized medical assistance in dying (MAID) for mentally competent persons who satisfy the legal requirements. Debate is ongoing as to whether MAID should be accessible to no-longer-competent persons through an advance request. We conducted an anonymous vignette-based survey among 367 social workers from Quebec to (1) elicit their attitudes toward MAID in the context of dementia; (2) assess their underlying values and beliefs; and (3) compare their attitudes to those of nurses (n = 291) and physicians (n = 136). Acceptability of MAID among social workers ranges from 42% in the case where the person depicted in the vignette was still competent to request MAID herself, to 92% in that where she was incompetent, had requested MAID in writing before losing capacity, showed signs of severe distress, and was close to death. Acceptability tends to be higher among social workers than among nurses and physicians. Forty-one per cent of social workers dread the prospect of participating in the MAID process for a person lacking decisional capacity. Nonetheless, 83% would agree to be involved. Should MAID become accessible to persons lacking decisional capacity, social workers willing to be involved will need to be educated and trained in participating in this emotionally-charged process.

Occupational Therapy Practice in Palliative and End-of-Life Care in Québec.

Background. There is an emerging evidence base about the scope of occupational therapy in palliative and end-of-life care, but little is known about this practice in Québec or barriers impeding it. Purpose. To describe Québec occupational therapists' practice in palliative and end-of-life care and barriers they encounter. Method. Using the Québec regulatory board members list, we invited occupational therapists working in palliative and end-of-life care to answer an online survey comprising 24 closed- and 5 open-ended questions. We analyzed data using descriptive statistics and content analysis. Findings. The 67 survey participants mainly optimized comfort and safety in meaningful occupations such as mobility, transfers, and hygiene. Barriers to their practice included organizational obstacles and unfamiliarity with their role. Implications. Findings highlight the need to improve education and awareness among occupational therapists and other healthcare professionals about the scope of what occupational therapists can do in palliative and end-of-life care.

The Quebec Observatory on End-of-Life Care for People with Dementia: Implementation and Preliminary Findings.

Most Canadians with dementia die in long-term care (LTC) facilities. No data are routinely collected in Canada on the quality of end-of-life care provided to this vulnerable population, leading to significant knowledge gaps. The Quebec Observatory on End-of-Life Care for People with Dementia was created to address these gaps. The Observatory is a research infrastructure designed to support the collection of data needed to better understand, and subsequently enhance, care quality for residents dying with dementia. This article reports on the main steps involved in setting up the Observatory, as well as a pilot study that involved 172 residents with dementia who died between 2016 and 2018 in one of 13 participating facilities. It describes the data gathered, methodological changes that were made along the way, feedback from participating facilities, and future developments of the Observatory.

Physicians' Characteristics and Attitudes Towards Medically Assisted Dying for Non-Competent Patients with Dementia.

The federal and Quebec governments are both considering extending medical aid/assistance in dying (MAID) to non-competent patients who would have requested MAID prior to losing capacity. In 2016-2017, we surveyed 136 Quebec physicians (response rate: 25.5%) on their attitudes towards extending MAID to such patients. Complementing our published findings, we herein identify demographic and practice characteristics that distinguish physicians who reported being open to extending MAID to non-competent patients with dementia, or willing to administer MAID themselves should it be legal, from those who were not. We found that physicians who were older, had stronger religious beliefs, were trained in palliative care, practiced in a teaching hospital, and had not received assisted dying requests in the year preceding the survey held less favourable attitudes towards MAID for non-competent patients with dementia. These findings will inform current deliberations as to whether assistance in dying should be extended to non-competent patients in some circumstances.

Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders.

BACKGROUND: Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. METHODS: We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death. RESULTS: Support for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics. CONCLUSIONS: Findings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.

Comparing the attitudes of four groups of stakeholders from Quebec, Canada, toward extending medical aid in dying to incompetent patients with dementia.

OBJECTIVE: The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia. METHODS: We conducted a province-wide postal survey in random samples of older adults, informal caregivers of persons with dementia, nurses, and physicians caring for patients with dementia. Clinical vignettes featuring a patient with Alzheimer's disease were used to measure the acceptability of extending MAID to incompetent patients with dementia. Vignettes varied according to the stage of the disease (advanced or terminal) and type of request (written or oral only). We used the generalized estimating equation (GEE) approach to compare attitudes across groups and vignettes. RESULTS: Response rates ranged from 25% for physicians to 69% for informal caregivers. In all four groups, the proportion of respondents who felt it was acceptable to extend MAID to an incompetent patient with dementia was highest when the patient was at the terminal stage, showed signs of distress, and had written a MAID request prior to losing capacity. In those circumstances, this proportion ranged from 71% among physicians to 91% among informal caregivers. CONCLUSION: We found high support in Quebec for extending the current MAID legislation to incompetent patients with dementia who have reached the terminal stage, appear to be suffering, and had requested MAID in writing while still competent.

Advance Directive for Research: How Do They Compare with Surrogates' Predictions of Older Adults' Preferences?

Surrogates' decisions and advance directives currently offer the best opportunities for people to participate in research at times of decisional incapacity. We investigated which of these options better reflects an older adult's willingness to engage in research should he or she be solicited to enroll in a study after losing the capacity to consent. Data were drawn from a recently completed trial in which older adults were invited to record their research advance directives in a booklet designed for that purpose. Three vignettes describing hypothetical studies were later used to elicit older adults' willingness to engage in these studies. Statistical analyses involved comparing surrogates' and advance directives' ability to predict the older adults' answers. No significant differences in agreement with older adults' hypothetical choices were found between surrogates and advance directives (p-values ranged from 0.164 to 0.720). Future studies could test whether more specific forms of research advance directives would assist surrogates in making research-related decisions for their loved ones.

Quebec physicians' perspectives on medical aid in dying for incompetent patients with dementia.

OBJECTIVES: To elicit Quebec physicians' attitudes towards extending medical aid in dying (MAiD) to incompetent patients and to compare the attitudes of family physicians to those of other medical specialists. METHODS: We conducted a postal survey among physicians caring for patients with dementia. We used hypothetical vignettes to elicit their attitudes towards MAiD and continuous deep sedation (CDS) to relieve suffering at end of life. Two patients were depicted in the vignettes: one with cancer eligible for MAiD and one with dementia. The generalized estimating equation approach was used to investigate factors associated with attitudes, including the stage of the illness (advanced vs terminal dementia) and the presence or absence of a prior written request. RESULTS: A total of 136 physicians out of 653 returned the questionnaire. Physicians favoured CDS over MAiD for relieving suffering in the cancer vignette (93% vs 79%; p = 0.002). In advanced dementia, 45% of physicians supported giving the patient access to MAiD with a written request and 14% without such request. At the terminal stage of dementia, these proportions increased to 71% and 43%, respectively (p < 0.001), reaching 79% and 52% among family physicians. Support for CDS in terminal dementia was lower than in end-stage cancer (68% vs 93%; p < 0.001) and equal to MAiD with a written request (68% vs 71%; p = 0.623). CONCLUSION: Many Quebec physicians support extending MAiD to incompetent patients with dementia to relieve suffering at the terminal stage. This finding will inform current deliberations as to whether MAiD should be extended to these patients.

Making medical decisions for an incompetent older adult when both a proxy and an advance directive are available: which is more likely to reflect the older adult's preferences?

OBJECTIVES: To investigate which of two sources of information about an older adult's wishes-choices made in an advance directive or proxy's opinion-provides better insight into the older adult's preferences measured in hypothetical clinical situations involving decisional incapacity. METHODS: Secondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express healthcare preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult's answers in each of the seven scenarios. RESULTS: Eighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies' guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios. CONCLUSIONS: Findings suggest that a directive might provide better insight into a person's wishes than the person's proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own. TRIAL REGISTRATION NUMBER: ISRCTN89993391; Post-results.

Effects of advance care planning on confidence in surrogates' ability to make healthcare decisions consistent with older adults' wishes: Findings from a randomized controlled trial.

OBJECTIVE: To investigate how confidence in surrogates' ability to make consistent decisions in the future change over time, in the context of an ACP intervention that did not improve surrogates' ability to predict an older adult's hypothetical treatment preferences. METHODS: The study involved 235 older adults and surrogates, randomly allocated to an ACP or control intervention. At baseline, end of intervention, and six months later, participants were asked how confident they were in the surrogate making decisions in the future that would match the older adult's wishes. RESULTS: By the end of the intervention, confidence had increased among older adults and surrogates involved in ACP (OR = 3.1 and 5.8 respectively, p < 0.001), while less change occurred among controls. Over the following six months, confidence remained stable among older adults but decreased among surrogates (OR = 0.5, p = 0.005). CONCLUSION: ACP increases confidence in surrogates' ability to make consistent decisions, which may lighten the burden of substitute decision making. Efforts to improve substitute decision-making must continue so that participants' confidence is not based on the mistaken assumption that surrogates can make consistent decisions. PRACTICE IMPLICATIONS: Professionals involved in ACP should inform participants that confidence in the surrogate may increase in the absence of enhanced predictive ability.

Converting Functional Autonomy Measurement System Scores of Patients Post-Stroke to FIM Scores.

Purpose: The Functional Independence Measure (FIM) is widely used to assess persons post-stroke. The Quebec government has selected the Functional Autonomy Measurement System (SMAF) for use in all care settings. In this article, we propose simple equations to convert SMAF scores to FIM scores for persons undergoing post-stroke rehabilitation. Method: Persons post-stroke (n=143) from three rehabilitation centres were assessed at admission and discharge using the FIM and SMAF. The sample was randomly split into derivation and validation data sets. Regression analysis was performed on the first data set to derive a conversion equation at each time point. The validity of the equations was measured using correlation coefficients, and differences between the observed and predicted FIM scores were computed from the second data set. Results: The relationship between the SMAF and FIM scores was linear at admission but quadratic at discharge. The proposed equations are, at admission, FIM=139-1.5×SMAF and, at discharge, FIM=118-0.018×SMAF2. The observed and predicted FIM scores were highly correlated in the validation data set (rs=0.92 and 0.93 at admission and discharge, respectively). Furthermore, the equations performed well in classifying stroke severity compared with a classification based on the observed FIM scores. Conclusions: SMAF scores can be reliably converted to FIM scores using the proposed equations, thus facilitating international trials in stroke rehabilitation.

Objectif : la mesure de l'indépendance fonctionnelle (MIF) est largement utilisée lors de l'évaluation après un accident vasculaire cérébral (AVC). Le gouvernement du Québec a retenu l'utilisation du système de mesure de l'autonomie fonctionnelle (SMAF) dans tous les établissements de soins. Le présent article présente des équations simples pour convertir les scores du SMAF en scores de MIF chez les personnes en réadaptation après un AVC. Méthodologie : les chercheurs ont évalué les personnes qui avaient subi un AVC (n=143) de trois centres de réadaptation à l'aide de la MIF et du SMAF à l'admission et au congé. Ils ont divisé l'échantillon aléatoirement en ensembles de données de dérivation et de validation. Ils ont procédé à une analyse de régression du premier ensemble de données pour dériver une équation de conversion à chaque point dans le temps. Ils ont mesuré la validité des équations au moyen de coefficients de corrélation et calculé les différences entre les scores de MIF observés et prédits à partir du deuxième ensemble de données. Résultats : la relation entre les scores du SMAF et de MIF était linéaire à l'admission, mais quadratique au congé. À l'admission, l'équation proposée est MIF=139−1,5×SMAF et, au congé, MIF=118−0,018×SMAF2. Les scores de MIF observés et prédits étaient hautement corrélés dans l'ensemble de données de validation (r = 0,92 et 0,93 à l'admission et au congé, respectivement). De plus, les équations donnaient de bons résultats dans le classement de la gravité des AVC par rapport au classement reposant sur les scores de MIF observés. Conclusions : on peut convertir les scores de SMAF en toute fiabilité à l'aide des équations proposées, facilitant ainsi les essais internationaux sur la réadaptation après un AVC.

Are Informal Caregivers of Persons With Dementia Open to Extending Medical Aid in Dying to Incompetent Patients? Findings From a Survey Conducted in Quebec, Canada.

Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.

Should Medical Assistance in Dying Be Extended to Incompetent Patients With Dementia? Research Protocol of a Survey Among Four Groups of Stakeholders From Quebec, Canada.

BACKGROUND: Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity. OBJECTIVE: Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders' attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders' attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol. METHODS: Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer's disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient's substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents' attitudes. RESULTS: The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail. CONCLUSIONS: This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions.