Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

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.

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.

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.

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' 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.

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.

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.

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.

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.

Reliability of health-related quality-of-life assessments made by older adults and significant others for health states of increasing cognitive impairment.

BACKGROUND: Older adults are encouraged by many organizations to engage in advance care planning in the event of decisional incapacity. Planning for future health care often involves anticipating health-related quality of life (HRQoL) in states of reduced cognitive functioning. No study has yet examined whether anticipated HRQoL is stable over time. The accuracy with which significant others can predict how an older adult envisions HRQoL in a future state of cognitive impairment is also unknown. We investigated the extent to which health-related quality-of-life ratings made by older adults and designated proxies for health states of increasing cognitive impairment are consistent over time and agree with each other. METHODS: Results are based on HRQoL ratings made on a 5-point Likert scale by 235 community-based elder-proxy dyads on three occasions. Ratings were obtained for the older adult's current health state as well as under the assumption that he/she had a mild to moderate stroke, incurable brain cancer or severe dementia. Data were analyzed using both traditional approaches (e.g., intraclass correlation coefficients, Bland-Altman plots) and the theory of generalizability. RESULTS: We found ratings to be reasonably consistent over time and in good agreement within dyads, even more so as implied cognitive functioning worsened. Across health states, ratings over time or within elder-proxy dyads were no more than one category apart in over 87% of cases. Using the theory of generalizability, we further found that, of the two facets investigated, rater had a greater influence on score variability than occasion. CONCLUSIONS: These findings underscore the importance of discussing health-related quality-of-life issues during advance care planning and involving designated proxies in the discussion to enhance their understanding of the role that HRQoL should play in actual decision-making situations. Medical decision-making may be influenced by healthcare providers' and family members' assessments of an incapacitated patient's health-related quality of life, in addition to that of the designated proxy. Future studies should investigate whether these two groups of individuals share the views of the patient and the designated proxy on anticipated HRQoL.

Surrogate inaccuracy in predicting older adults' desire for life-sustaining interventions in the event of decisional incapacity: is it due in part to erroneous quality-of-life assessments?

BACKGROUND: Family members are often called upon to make decisions for an incapacitated relative. Yet they have difficulty predicting a loved one's desire to receive treatments in hypothetical situations. We tested the hypothesis that this difficulty could in part be explained by discrepant quality-of-life assessments. METHODS: The data come from 235 community-dwelling adults aged 70 years and over who rated their quality of life and desire for specified interventions in four health states (current state, mild to moderate stroke, incurable brain cancer, and severe dementia). All ratings were made on Likert-type scales. Using identical rating scales, a surrogate chosen by the older adult was asked to predict the latter's responses. Linear mixed models were fitted to determine whether differences in quality-of-life ratings between the older adult and surrogate were associated with surrogates' inaccuracy in predicting desire for treatment. RESULTS: The difference in quality-of-life ratings was a significant predictor of prediction inaccuracy for the three hypothetical health states (p < 0.01) and nearly significant for the current health state (p = 0.077). All regression coefficients were negative, implying that the more the surrogate overestimated quality of life compared to the older adult, the more he or she overestimated the older adult's desire to be treated. CONCLUSION: Discrepant quality-of-life ratings are associated with surrogates' difficulty in predicting desire for life-sustaining interventions in hypothetical situations. This finding underscores the importance of discussing anticipated quality of life in states of cognitive decline, to better prepare family members for making difficult decisions for their loved ones. TRIAL REGISTRATION NUMBER: ISRCTN89993391.

Does regulating private long-term care facilities lead to better care? A study from Quebec, Canada.

OBJECTIVE: In the province of Quebec, Canada, long-term residential care is provided by two types of facilities: publicly funded accredited facilities and privately owned facilities in which care is privately financed and delivered. Following evidence that private facilities were delivering inadequate care, the provincial government decided to regulate this industry. We assessed the impact of regulation on care quality by comparing quality assessments made before and after regulation. In both periods, public facilities served as a comparison group. DESIGN: A cross-sectional study conducted in 2010-12 that incorporates data collected in 1995-2000. SETTINGS: Random samples of private and public facilities from two regions of Quebec. PARTICIPANTS: Random samples of disabled residents aged 65 years and over. In total, 451 residents from 145 care settings assessed in 1995-2000 were compared with 329 residents from 102 care settings assessed in 2010-12. INTERVENTION: Regulation introduced by the province in 2005, effective February 2007. MAIN OUTCOME MEASURE: Quality of care measured with the QUALCARE Scale. RESULTS: After regulation, fewer small-size facilities were in operation in the private market. Between the two study periods, the proportion of residents with severe disabilities decreased in private facilities whereas it remained >80% in their public counterparts. Meanwhile, quality of care improved significantly in private facilities, while worsening in their public counterparts, even after controlling for confounding. CONCLUSIONS: The private industry now provides better care to its residents. Improvement in care quality likely results in part from the closure of small homes and change in resident case-mix.

Substitute consent practices in the face of uncertainty: a survey of Canadian researchers in aging.

BACKGROUND: In Canada and elsewhere, research policies require researchers to secure consent from a legally authorized representative (LAR) for prospective participants unable to consent. Few jurisdictions, however, offer a clear legislative basis for LAR identification. We investigated Canadian researchers' practices regarding the involvement of decisionally incapacitated participants and tested whether reported practices were associated with (1) researchers' understanding of the law on third-party authorization of research and (2) their comfort with allowing a family member to consent on behalf of an incapacitated relative. METHODS: We surveyed researchers in aging from four Canadian provinces about their practices with prospective participants deemed incapable of consent, their understanding of relevant law, and comfort with family consent for research purposes. Understanding and comfort were measured with research vignettes that briefly described hypothetical studies in which an adult who lacks the capacity to consent was invited to participate. RESULTS: Many respondents reported soliciting consent from a family member (45.7% for low-risk studies and 10.7% for serious risks studies), even in jurisdictions where such authority is uncertain at law. Researchers' tendency to solicit family consent was associated with their comfort in doing so, but not with their understanding of the law on substitute consent for research. CONCLUSIONS: Findings underscore the need to clarify who may authorize an incapacitated adult's participation in research. Meanwhile, people should inform their relatives of their desire to participate or not in research in the event of incapacity, given researchers' tendency to turn to family for consent, even where not supported by law.

Family physician enabling attitudes: a qualitative study of patient perceptions.

BACKGROUND: Family physicians frequently interact with people affected by chronic diseases, placing them in a privileged position to enable patients to gain control over and improve their health. Soliciting patients' perceptions about how their family physician can help them in this process is an essential step to promoting enabling attitudes among these health professionals. In this study, we aimed to identify family physician enabling attitudes and behaviours from the perspective of patients with chronic diseases. METHODS: We conducted a descriptive qualitative study with 30 patients, 35 to 75 years of age presenting at least one common chronic disease, recruited in primary care clinics in two regions of Quebec, Canada. Data were collected through in-depth interviews and were analyzed using thematic analysis. RESULTS: Family physician involvement in a partnership was perceived by participants as the main attribute of enablement. Promoting patient interests in the health care system was also important. Participants considered that having their situation taken into account maximized the impact of their physician's interventions and allowed the legitimization of their feelings. They found their family physician to be in a good position to acknowledge and promote their expertise, and to help them maintain hope. CONCLUSIONS: From the patient's perspective, their partnership with their family physician is the most important aspect of enablement.

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.

Promoting advance planning for health care and research among older adults: a randomized controlled trial.

BACKGROUND: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. METHODS/DESIGN: Dyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments. DISCUSSION: This study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system. TRIAL REGISTRATION: ISRCTN89993391.