Medical assistance in dying for mental illness: a complex intervention requiring a correspondingly complex evaluation approach.

Medical assistance in dying for mental illness as a sole underlying medical condition (MAiD MI-SUMC) is a controversial and complex policy in terms of psychosocial and ethical medical practice implications. We discuss the status of MAiD MI-SUMC in Canada and argue for the use of the UK Medical Research Council's framework on complex interventions in programme evaluations of MAiD MI-SUMC. It is imperative to carefully and rigorously evaluate the implementation of MAiD MI-SUMC to ensure an understanding of the multiple facets of implementation in contexts permeated by unique social, economic, cultural and historical influences, with a correspondingly diverse array of outcomes. This requires a complexity-informed programme evaluation focused on context-dependent mechanisms and stakeholder experiences, including patients, service providers and other people affected by the policy. It is also important to consider the economic impact on health and social welfare systems. Such evaluations can provide the data needed to guide evidence-informed decision-making that can contribute to safer implementation and refinement of MAiD MI-SUMC.

Care considerations in medical assistance in dying for persons with mental illness as the sole underlying medical condition: a qualitative study of patient and family perspectives.

BACKGROUND: Persons with mental illness as their sole underlying medical condition are eligible to access medical assistance in dying (MAiD) in a small number of countries, including Belgium, the Netherlands, Luxemburg and Switzerland. In Canada, it is anticipated that people experiencing mental illness as their sole underlying medical condition (MI-SUMC) will be eligible to request MAiD as of March 17th 2024. To date, few studies have addressed patient and family perspectives on MAiD MI-SUMC care processes. This study aimed to address this gap and qualitatively explore the perspectives of persons with lived experience of mental illness and family members on care considerations during MI-SUMC implementation. METHODS: Thirty adults with lived experience of mental illness and 25 adult family members residing in Ontario participated in this study. To facilitate participant engagement, the semi-structured interview used a persona-scenario exercise to discuss perspectives on MAiD MI-SUMC acceptability and care considerations. Framework analysis was used to inductively analyze data using NVivo 12 Pro. Steps, processes, or other care considerations suggested by the participants were charted in a framework matrix after familiarization with the narratives. Key themes were further identified. A lived-experience advisory group participated in every aspect of this study. RESULTS: Six themes were developed from the patient and family narratives: (1) Raising MAiD MI-SUMC awareness; (2) Sensitive Introduction of MAiD MI-SUMC in goals of care discussions; (3) Asking for MAiD MI-SUMC: a person-focused response; (4) A comprehensive circle of MAiD MI-SUMC care; (5) A holistic, person-centered assessment process; and (6) Need for support in the aftermath of the decision. These themes highlighted a congruence of views between patient and family members and described key desired process ingredients, including a person-centred non-judgmental stance by care providers, inter-professional holistic care, shared decision making, and the primacy of patient autonomy in healthcare decision making. CONCLUSIONS: Family and patient perspectives on the implementation of MAiD MI-SUMC offer important considerations for service planning that could complement existing and emerging professional practice standards. These stakeholders' perspectives will continue to be essential in MAiD MI-SUMC implementation efforts, to better address the needs of diverse communities and inform improvement efforts.

Medical Assistance in Dying for Mental Illness as a Sole Underlying Medical Condition and Its Relationship to Suicide: A Qualitative Lived Experience-Engaged Study: Aide Médicale à Mourir Pour Maladie Mentale Comme Seule Condition Médicale Sous-Jacente et Son Lien Avec le Suicide: Une Etude Qualitative Engagée Dans l'Expérience Vécue.

OBJECTIVE: This lived experience-engaged study aims to understand patient and family perspectives on the relationship between suicidality and medical assistance in dying when the sole underlying medical condition is mental illness (MAiD MI-SUMC). METHOD: Thirty individuals with mental illness (age M = 41.8 years, SD = 14.2) and 25 family members (age M = 47.5 years, SD = 16.0) participated in qualitative interviews examining perspectives on MAiD MI-SUMC and its relationship with suicide. Audio recordings were transcribed and analysed using reflexive thematic analysis. People with lived experience were engaged in the research process as team members. RESULTS: Four main themes were developed, which were consistent across individuals with mental illness and family members: (a) deciding to die is an individual choice to end the ongoing intolerable suffering of people with mental illness; (b) MAiD MI-SUMC is the same as suicide because the end result is death, although suicide can be more impulsive; (c) MAiD MI-SUMC is a humane, dignified, safe, nonstigmatized alternative to suicide; and (4) suicidality should be considered when MAiD MI-SUMC is requested, but suicidality's role is multifaceted given its diverse manifestations. CONCLUSION: For patient-oriented mental health policy and treatment, it is critical that the voices of people with lived experience be heard on the issue of MAiD MI-SUMC. Given the important intersections between MAiD MI-SUMC and suicidality and the context of suicide prevention, the role that suicidality should play in MAiD MI-SUMC is multifaceted. Future research and policy development are required to ensure that patient and family perspectives guide the development and implementation of MAiD MI-SUMC policy and practice.

Walking Alongside: Views of Family Members on Medical Assistance in Dying for Mental Illness as the Sole Underlying Medical Condition.

Medical assistance in dying (MAiD) was introduced into Canadian federal legislation in 2016. Mental illness as the sole underlying medical condition (MI-SUMC) is currently excluded from eligibility; such exclusion is scheduled to expire on March 17, 2024. Irremediability, capacity, quality of life, autonomy, family involvement, and healthcare system constraints have been debated intensively. Recent studies have not explored the views of family members of persons with mental illness on MAiD MI-SUMC. This study aimed to fill this knowledge gap. Twenty-five Ontario residents who had a loved one with mental illness participated. A persona-scenario exercise was designed to explore participants' views on MAiD MI-SUMC in hypothetical situations. Reflexive thematic analysis was used to analyze the data. A lived experience-advisory panel was engaged throughout the study. Seven themes were developed: Witnessing suffering; A road with barriers and limitations; Societal barriers; The unknowns of mental illness; Individual choices: the life or death that a person wants; MAiD MI-SUMC as an acceptable choice when suffering cannot be relieved with available treatments and supports; and The emotional outcome. Participants constructed their views based on their experience of supporting a loved one with mental illness. MAiD MI-SUMC was perceived as a multifaceted issue, whose acceptability and potential introduction required a concurrent exploration and discussion of the challenges arising due to limitations of the healthcare system, the opportunities and limits to family involvement, and the value of patient autonomy.

Searching for relief from suffering: A patient-oriented qualitative study on medical assistance in dying for mental illness as the sole underlying medical condition.

Medical assistance in dying (MAiD) was introduced into Canadian legislation in 2016. Mental illness as the sole underlying medical condition (MI-SUMC) is excluded from eligibility; this is expected to change in 2024. Incurability, intolerable suffering, capacity to make healthcare decisions, and suicidality have been publicly debated in connection with mental illness. Few studies have explored the views of persons with mental illness on the introduction and acceptability of MAiD MI-SUMC; this study aimed to fill this gap. Thirty adults, residing in Ontario, Canada, who self-identified as living with mental illness participated. A semi-structured interview including a persona-scenario exercise was designed to discuss participants' views on MAiD MI-SUMC and when it could be acceptable or not. Reflexive thematic analysis was used to inductively analyze data. Codes and themes were developed after extensive familiarization with the dataset. A lived-experience advisory group was engaged throughout the study. We identified six themes: The certainty of suffering; Is there a suffering threshold to be met? The uncertainty of mental illness; My own limits, values, and decisions; MAiD MI-SUMCas acceptable when therapeutic means, and othersupports, have been tried to alleviate long-term suffering; and Between relief and rejection. These themes underline how the participants' lived experience comprised negative impacts caused by long-term mental illness, stigma, and in some cases, socioeconomic factors. The need for therapeutic and non-therapeutic supports was highlighted, along with unresolved tensions about the links between mental illness, capacity, and suicidality. Although not all participants viewed MAiD MI-SUMC as acceptable for mental illness, they autonomously embraced limits, values, and decisions of their own along their search for relief. Identifying individual and contextual elements in each person's experience of illness and suffering is necessary to understand diverse perspectives on MAiD MI-SUMC.

The experience of Colombian boys and young men living with Duchenne muscular dystrophy / A experiência dos meninos e jovens colombianos que vivem com distrofia muscular de Duchenne / L'expérience des garçons et des jeunes hommes colombiens vivant avec dystrophie musculaire de Duchenne / La experiencia de niños y jóvenes colombianos que viven con distrofia muscular de Duchenne

Abstract Duchenne muscular dystrophy (DMD) is a chronic disease that primarily affects males and is characterized by progressive physical impairment and, eventually, death. This qualitative study aimed to explore and understand the experience of diagnosis and disease in young people with DMD living in Bogotá, Colombia. After securing approval from the Research Ethics Committee (CEI-ABN026-000311), nine individuals took part of a semi-structured interview, and their narratives were analyzed using thematic analysis. The main topics developed throughout the narratives were: negative representation of the disease; fear; difficulty expressing emotions; the patient-doctor relationship; the wheelchair; the caregivers and coping strategies. We conclude that young people affected by DMD face several challenging experiences that underscore the need for better, more respectful, and compassionate interactions with healthcare providers. Also, their experiences are indicative of a socio-cultural context that needs to become more responsive and compassionate towards young people and disability.

Resumo A distrofia muscular de Duchenne (DMD) é uma doença crônica que afeta principalmente os homens, caracterizada pelo deterioro físico progressivo e por conduzir à morte. Este estudo qualitativo teve como objetivo a exploração e a compreensão da experiência do diagnóstico e da doença em jovens com DMD residentes em Bogotá, Colômbia. Após a aprovação do Comitê de Ética em Pesquisa (CEI-ABN026-000311), nove participantes participaram numa entrevista semiestruturada e as suas narrativas foram analisadas através da análise temática. Os principais temas abordados foram: a representação negativa da doença; o medo; a dificuldade em expressar emoções; a relação paciente-médico; a cadeira de rodas; os cuidadores e as estratégias de resiliência. Concluímos que os jovens afetados pela DMD enfrentam experiências desafiantes que evidenciam a necessidade de interações melhores, mais respeitosas e compassivas com os profissionais de saúde. Ao mesmo tempo, as suas experiências são indicativas de um contexto sociocultural que precisa de se tornar mais recetivo e compassivo para com os jovens e as deficiências.

Résumé La Dystrophie Musculaire de Duchenne (DMD) est une maladie chronique qui touche principalement les hommes et se caractérise par détérioration physique progressive et, éventuellement, la mort. Cette rechérche qualitative a explorer l'expérience du diagnostic et de la maladie chez les jeunes atteints de DMD à Bogotá, Colombie. Cette rechérche a été évaluée et approuvée par un comité d'éthique de la recherche (CEI-ABN026-000311). Neuf jeunes ont participé à un entretien semi-structuré et leurs récits ont été analysés à l'aide d'une analyse thématique. Les principaux thèmes développés dans les récits étaient: la représentation négative de la maladie; peur; difficulté à exprimer ses émotions; la relation médecin-patient; le fauteuil roulant; soignants et stratégies d'adaptation. Nous concluons que les jeunes touchés par la DMD vivent de multiples expériences difficiles qui mettent en évidence la nécessité d'interactions plus respectueuses et plus compatissantes avec les prestataires de services de santé. En même temps, leurs expériences montrent un contexte socioculturel qui doit être plus sensible et compatissant envers les enfants et les jeunes handicapés.

Resumen La distrofia muscular de Duchenne (DMD) es una enfermedad crónica que afecta principalmente a hombres y se caracteriza por deterioro físico progresivo y, eventualmente, la muerte. Este estudio cualitativo buscó explorar y comprender la experiencia del diagnóstico y la enfermedad en jóvenes con DMD en la ciudad de Bogotá, Colombia. Tras recibir autorización del Comité de Ética en Investigación (CEI-ABN026-000311), nueve participantes colaboraron con una entrevista semiestructurada y sus narrativas fueron analizadas usando análisis temático. Los principales temas desarrollados en las narrativas fueron: representación negativa de la enfermedad; miedo; dificultad expresando emociones; la relación médico-paciente; la silla de ruedas; los cuidadores y las estrategias de afrontamiento. Concluimos que los jóvenes afectados por la DMD enfrentan múltiples experiencias retadoras que hacen evidente la necesidad de interacciones más respetuosas y compasivas con los proveedores de servicios de salud. Al mismo tiempo, sus experiencias muestran un contexto sociocultural que necesita ser más sensible y compasivo con los niños y jóvenes en situación de discapacidad.

Propiedades psicométricas de las escalas BAS-DEP y EBAS-DEP en español para el tamizaje de depresión en una muestra geriátrica multisitio en Colombia: un estudio exploratorio / Psychometric properties of the Spanish versions of the BAS-DEP and EBAS-DEP scales as screening instruments for depression in a multi-site geriatric Colombian sample: an exploratory study / Propriedades psicrométricas das escalas BAS-DEP e EBAS-DEP em espanhol para a triagem de depressão em uma mostra geriátrica na Colômbia: um estudo exploratório

En este estudio se exploraron las propiedades psicométricas de la escala breve para la evaluación de la depresión (BAS-DEP Brief Assessment Scale for Depression) y la escala ultra-breve para la evaluación de la depresión (EBAS-DEP Even Briefer Assessment Scale for Depression) en una muestra de 104 adultos mayores, 41 hombres y 63 mujeres, residentes en dos ciudades Colombianas. La BAS-DEP contenía 21 preguntas dicotómicas sobre ánimo depresivo, preocupaciones, ideación suicida y quejas somáticas, mientras que la EBAS-DEP se obtuvo extrayendo 8 ítems de la BAS-DEP y cuyo desempeño psicométrico ha sido descrito como equivalente por los autores del estudio original (Allen, et al., 1994). Se evaluó la confiabilidad y validez, sensibilidad y especificidad, y se obtuvieron curvas de características operativas del receptor (ROC). Se realizaron análisis Rasch de ajuste, dificultad, habilidad y mapeo de ítems. La BAS-DEP mostró un nivel apropiado de confiabilidad (.82) mientras que dicho valor fuebajo para la EBAS-DEP (.56). La baja confiabilidad de la EBAS-DEP podría ser explicada por su brevedad aunque su sensibilidad y especificidad fueron apropiadas. Las soluciones factoriales demostraron que la mayoría de ítems de la BAS-DEP y EBAS-DEP aportaban en la explicación de la varianza total.Al usar la escala de depresión geriátrica (GDS) de Yesavage como criterio externo de validez, se obtuvieron coeficientes de sensibilidad y especificidad superiores a 0,70 con puntajes de corte 5/6 para la BAS-DEP y 2/3 para la EBAS-DEP. Los estadísticos ROC mostraron que las escalas son similares en su eficiencia para detectar depresión en la muestra. Estos hallazgos se asemejan a los reportados por estudios efectuados en Australia, Inglaterra, Alemania y China. Éste ha sido el primer estudio de las propiedades psicométricas de las versiones en español de estas escalas.La realización de nuevas investigaciones independientes permitirá enriquecer la base de evidencia a favor de la utilidad y validez de estos instrumentos.

This study aimed atexploring the psychometric properties of the Brief Assessment Scale for Depression (BAS-DEP) and the Even Briefer Assessment Scale for Depression (EBAS-DEP) scales as screening instruments in a sample of 104 elderly participants, 41 men and 63 women, residing in two Colombian cities. The BAS-DEP included 21 items assessing depressive mood, worry, suicidal ideation and somatic complaints. Meanwhile, the EBAS-DEP was derived by means of extracting 8 ítems of the BAS-DEP, and its performance was regarded as equivalent by the authors of the original study (Allen, et al., 1994).Reliability, validity,sensitivity and specificity were assessedand a receiver operating characteristics curve (ROC) was obtained. Rasch analyses of adjustment, difficulty, and performance were executed and an item map was obtained.The BAS-DEP showed an appropriate level of reliability (.82).Nonetheless, such value was low for the EBAS-DEP (.56).Low reliability of the EBAS-DEP could be explained in terms of its briefness.Nevertheless, its performance in terms of sensitivity and specificity was appropriate. Factor solutions derived from the analyses revealed that most of the items in the BAS-DEP and EBAS-DEP scales contributed in explaining the total variance.When the Yesavage GDS scale was used as an external criterion of validity, coefficients of sensitivity and specificity above .70 were obtained in addition to cut-off scores of 5/6 for the BAS-DEP and 2/3 for the EBAS-DEP.ROC statistics showed that both scales are similarly efficient to detect depression in the sample.These findings are similar to those reported in studies conducted in Australia, England, Germany, and China. This study has been the first to assess the psychometric properties of the Spanish versions of these scales.Further independent studies will enrich the evidence base in favor of the usefulness and validity of these instruments.

Neste estudo foram exploradas as propriedades psicométricas da escala breve para a avaliação da depressão (BAS-DEP Brief Assessment Scale for Depression) e a escala ultrabreve para a avaliação da depressão (EBAS-DEP Even Briefer Assessment Scale for Depression) em uma mostra de 104 idosos, sendo 41 homens e 63 mulheres, residentes em duas cidades colombianas. A BASDEP continha 21 perguntas dicotômicas sobre ânimo depressivo, preocupações, ideias suicidas e queixas somáticas, enquanto que a EBAS-DEP foi obtida extraindo 8 itens da BAS-DEP e cujo desempenho psicométrico foi descrito como equivalente pelos autores do estudo original (Allen, et al., 1994). Avaliou-se a confiabilidade e validade, sensibilidade e especificidade, obtiveramse curvas de características operativas do receptor (ROC). Realizaram-se análises Rasch de ajuste, dificuldade, habilidade e mapeamento de itens. A BAS-DEP mostrou um nível apropriado de confiabilidade (.82) enquanto que esse valor foi baixo para a EBAS-DEP (.56). A baixa confiabilidade da EBAS-DEP poderia ser explicada por sua concisão ainda que sua sensibilidade e especificidade foram apropriadas. As soluções fatoriais demonstraram que a maioria dos itens da BAS-DEP e EBAS-DEP contribuía na explicação da variância total. Ao usar a escala de depressão geriátrica (GDS) de Yesavage como critério externo de validade, obtiveram-se coeficientes de sensibilidade e especificidade superiores a .70 com notas de corte 5/6 para a BAS-DEP e 2/3 para a EBAS-DEP. Os estatísticos ROC mostraram que as escalas são similares em sua eficiência para detectar depressão na mostra. Estes descobrimentos se assemelham aos relatados por estudos efetuados na Austrália, Inglaterra, Alemanha e China. Este foi o primeiro estudo das propriedades psicométricas das versões em espanhol destas escalas. A realização de novas pesquisas independentes permitirá enriquecer a base de evidência a favor da utilidade e validade destes instrumentos.