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  • 1
    Online Resource
    Online Resource
    Neuro-Oncology Clinicians’ Attitudes and Perspectives on Medical Assistance in Dying
    Cambridge University Press (CUP) ; 2021
    In:  Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques
    Details
    In: Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, Cambridge University Press (CUP)
    Abstract: Attitudes et points de vue des cliniciens en neuro-oncologie en ce qui regarde l’aide médicale à mourir. Contexte : L’aide médicale à mourir (AMM), aussi connue comme la mort médicalement assistée (MMA), est actuellement légale dans plusieurs pays du monde. À ce sujet, on sait que les cancers du cerveau ou leurs traitements peuvent entraîner des troubles cognitifs, lesquels, en retour, peuvent avoir un impact sur la capacité de prise de décision en matière d’AMM. Objectif : Nous avons voulu nous pencher sur les attitudes et les points de vue des cliniciens en neuro-oncologie en ce qui regarde l’AMM, notamment l’interprétation qu’ils font des capacités de prise de décision des patients quand il est question de leur admissibilité à l’AMM. Méthodes : Un sondage en ligne a donc été envoyé aux membres des associations nationales et internationales en neuro-oncologie. Nous leur avons posé des questions concernant la capacité de prise de décision et l’AMM, et ce, en recourant en partie à des scénarios hypothétiques. Nous avons par la suite saisi leurs réponses à des questions à choix multiples et des questions à développement. Résultats : Au total, 125 répondants ont participé à notre sondage. Les troubles de la cognition ont été identifiés comme le facteur le plus important du déclin de la capacité de décision des patients. Au moins 26 % des répondants ont signalé avoir des objections morales à l’égard de l’AMM. Nos répondants ont par ailleurs estimé que divers patients « hypothétiques » possédaient en effet la capacité de prendre une décision en lien avec l’AMM (intervalle : 18–58 %). Dans le cas d’autres scénarios hypothétiques, moins de cliniciens étaient prêts à soutenir une décision d’AMM pour un patient atteint d’un oligodendrogliome (26 %) en comparaison avec un glioblastome (41–70 % selon le scénario). Le temps écoulé depuis un diagnostic, le déclin de l’autonomie fonctionnelle ( performance status ) et l’âge semblent à cet égard avoir un impact sur le soutien donné à l’AMM (valeurs en p au test exact de Fisher respectivement de 0,007 ; 〈 0,001 ; et 0,049). Conclusion : Bien qu’il subsiste des opinions divergentes en ce qui concerne l’acceptabilité morale de l’AMM en général et en ce qui concerne les patients atteints de tumeurs cérébrales en particulier, la plupart des cliniciens s’accordent à dire que la capacité de prise de décision doit être évaluée avec soin avant d’aller de l’avant. En cela, les discussions sur la fin de vie doivent avoir lieu tôt avant que cette capacité ne soit altérée. Nos conclusions peuvent ainsi permettre d’éclairer l’évaluations de cette capacité dans les juridictions où l’AMM est légale.
    Type of Medium: Online Resource
    ISSN: 0317-1671 , 2057-0155
    URL: Article
    DOI: 10.1017/cjn.2021.186
    RVK:
    XA 10000
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2577275-2
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  • 2
    Online Resource
    Online Resource
    Neuro-oncology clinicians’ perspectives on factors affecting brain cancer patients’ access to medical assistance in dying: A qualitative study
    Informa UK Limited ; 2023
    In:  Death Studies Vol. 47, No. 3 ( 2023-03-16), p. 296-306
    Details
    In: Death Studies, Informa UK Limited, Vol. 47, No. 3 ( 2023-03-16), p. 296-306
    Type of Medium: Online Resource
    ISSN: 0748-1187 , 1091-7683
    URL: Article
    DOI: 10.1080/07481187.2022.2063456
    Language: English
    Publisher: Informa UK Limited
    Publication Date: 2023
    detail.hit.zdb_id: 2004877-4
    SSG: 5,2
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  • 3
    Online Resource
    Online Resource
    Evaluation of Adolescents’ and Young Adults’ Attitudes Toward Participation in Cancer Clinical Trials
    American Society of Clinical Oncology (ASCO) ; 2020
    In:  JCO Oncology Practice Vol. 16, No. 3 ( 2020-03), p. e280-e289
    Details
    In: JCO Oncology Practice, American Society of Clinical Oncology (ASCO), Vol. 16, No. 3 ( 2020-03), p. e280-e289
    Abstract: Participation in cancer clinical trials (CCTs) for adolescents and young adults (AYAs) remains the lowest of any patient group with cancer. Little is known about the personal barriers to AYA accrual. The aim of this study was to explore AYA attitudes that influence CCT participation. METHODS: A mixed-methods approach was used. AYAs and non-AYAs (≥ 40 years) completed the Cancer Treatment subscale of the Attitudes Toward Cancer Trials Scales and 9 supplementary questions formed from interview analysis. Differences between AYA and non-AYA cohorts were analyzed using the Mann-Whitney U test, and logistic regression models were constructed to evaluate the effect of demographics on perceptions of CCTs. RESULTS: Surveys were distributed to 61 AYAs (median age, 29 years; range, 17-39 years) and 74 non-AYAs (median age, 55 years; range, 40-88 years). Compared with non-AYAs, AYAs perceived CCTs to be unsafe/more difficult (Personal Barrier/Safety domain; P = .01). There were no differences based on age in other domains. AYAs were also more concerned with CCT interference in their long-term goals ( P = .04). Multivariable ordered logistic regression identified increased personal barriers in the Personal Barrier/Safety domain for AYAs ( P = .01), in patients with English as a second language (ESL; P 〈 .01), and in patients previously not offered a clinical trial ( P = .03). Long-term goals were identified as a barrier in particular tumor types ( P = .01) and in patients with ESL ( P 〈 .01), with a trend identified in AYAs ( P = .12). CONCLUSION: Age-related differences in attitudes toward CCTs suggest that tailored approaches to CCT accrual are warranted. Patient-centered delivery of information regarding CCTs, particularly in patients with ESL and who are trial naïve, may improve accrual.
    Type of Medium: Online Resource
    ISSN: 2688-1527 , 2688-1535
    URL: Article
    DOI: 10.1200/JOP.19.00450
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2020
    detail.hit.zdb_id: 3005549-0
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  • 4
    Online Resource
    Online Resource
    A risk screening tool for ethical appraisal of evidence-generating initiatives
    Springer Science and Business Media LLC ; 2015
    In:  BMC Medical Ethics Vol. 16, No. 1 ( 2015-12)
    Details
    In: BMC Medical Ethics, Springer Science and Business Media LLC, Vol. 16, No. 1 ( 2015-12)
    Type of Medium: Online Resource
    ISSN: 1472-6939
    URL: Article
    DOI: 10.1186/s12910-015-0039-3
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2015
    detail.hit.zdb_id: 2041552-7
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  • 5
    Online Resource
    Online Resource
    Gatekeeping in cancer clinical trials in Canada: The ethics of recruiting the “ideal” patient
    Wiley ; 2020
    In:  Cancer Medicine Vol. 9, No. 12 ( 2020-06), p. 4107-4113
    Details
    In: Cancer Medicine, Wiley, Vol. 9, No. 12 ( 2020-06), p. 4107-4113
    Abstract: Perspectives of clinical trial (CT) personnel on accrual to oncology CTs are relatively absent from the literature. This study explores CT personnel's experience recruiting patients to oncology CTs. Methods A qualitative study design was utilized. In‐depth, individual interviews with 12 oncology CT personnel were conducted, including six CT nurses and six physician‐investigators. Interviews were digitally recorded and transcribed verbatim. Data were subjected to thematic and ethical analysis to identify key concepts and themes. Results CT personnel reported considering two ethical commitments in CT recruitment: maintaining trial integrity and ensuring patient autonomy through obtaining informed consent. The process of gatekeeping emerged as a way to navigate these ethical commitments during CT accrual. Gatekeeping was influenced by: (a) perceptions of patients’ personal suitability for a trial, and (b) healthcare resources and infrastructure. CT personnel's discernment of personal suitability was influenced by patients’ cognitive and mental health status, language and cultural background, geographic location, family support, and disease status. Three structural factors impacted gatekeeping: complexity of CTs, consent process, and time limitations in the healthcare system. CT personnel experienced most factors as constraints to accrual and gaining patients’ informed consent. Conclusion CT personnel discussed navigating ethical challenges in CT recruitment by offering enrollment to specific patient populations, exacerbating other ethical tensions. Systems‐level strategies are needed to address barriers to ethical CT recruitment. Future research should investigate the role of policies and/or tools (eg, decision aids) to support patients and CT personnel's discussions about CT participation, promote more ethical recruitment, and potentially increase accrual.
    Type of Medium: Online Resource
    ISSN: 2045-7634 , 2045-7634
    URL: Issue
    URL: Article
    DOI: 10.1002/cam4.v9.12
    DOI: 10.1002/cam4.3031
    Language: English
    Publisher: Wiley
    Publication Date: 2020
    detail.hit.zdb_id: 2659751-2
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  • 6
    Online Resource
    Online Resource
    Clinical ethics consultations: a scoping review of reported outcomes
    Springer Science and Business Media LLC ; 2022
    In:  BMC Medical Ethics Vol. 23, No. 1 ( 2022-09-27)
    Details
    In: BMC Medical Ethics, Springer Science and Business Media LLC, Vol. 23, No. 1 ( 2022-09-27)
    Abstract: Clinical ethics consultations (CEC) can be complex interventions, involving multiple methods, stakeholders, and competing ethical values. Despite longstanding calls for rigorous evaluation in the field, progress has been limited. The Medical Research Council (MRC) proposed guidelines for evaluating the effectiveness of complex interventions. The evaluation of CEC may benefit from application of the MRC framework to advance the transparency and methodological rigor of this field. A first step is to understand the outcomes measured in evaluations of CEC in healthcare settings. Objective The primary objective of this review was to identify and map the outcomes reported in primary studies of CEC. The secondary objective was to provide a comprehensive overview of CEC structures, processes, and roles to enhance understanding and to inform standardization. Methods We searched electronic databases to identify primary studies of CEC involving patients, substitute decision-makers and/or family members, clinicians, healthcare staff and leaders. Outcomes were mapped across five conceptual domains as identified a priori based on our clinical ethics experience and preliminary literature searches and revised based on our emerging interpretation of the data. These domains included personal factors, process factors, clinical factors, quality, and resource factors. Results Forty-eight studies were included in the review. Studies were highly heterogeneous and varied considerably regarding format and process of ethical intervention, credentials of interventionist, population of study, outcomes reported, and measures employed. In addition, few studies used validated measurement tools. The top three outcome domains that studies reported on were quality (n = 31), process factors (n = 23), and clinical factors (n = 19) . The majority of studies examined multiple outcome domains. All five outcome domains were multidimensional and included a variety of subthemes. Conclusions This scoping review represents the initial phase of mapping the outcomes reported in primary studies of CEC and identifying gaps in the evidence. The confirmed lack of standardization represents a hindrance to the provision of high quality intervention and CEC scientific progress. Insights gained can inform the development of a core outcome set to standardize outcome measures in CEC evaluation research and enable scientifically rigorous efficacy trials of CEC.
    Type of Medium: Online Resource
    ISSN: 1472-6939
    URL: Article
    DOI: 10.1186/s12910-022-00832-6
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2041552-7
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  • 7
    Online Resource
    Online Resource
    Relational Autonomy as a Theoretical Lens for Qualitative Health Research
    University of Toronto Press Inc. (UTPress) ; 2020
    In:  IJFAB: International Journal of Feminist Approaches to Bioethics Vol. 13, No. 2 ( 2020-08), p. 69-92
    Details
    In: IJFAB: International Journal of Feminist Approaches to Bioethics, University of Toronto Press Inc. (UTPress), Vol. 13, No. 2 ( 2020-08), p. 69-92
    Abstract: As scholars integrate empirical approaches to ethical questions in healthcare, relational autonomy theory must inform research design and change practice. Qualitative approaches are well suited to issues where patient values play a central role, and they can be combined with relational autonomy theory to investigate the factors influencing autonomy-rich experiences. This paper draws upon my experience conducting bioethics research related to clinical trial decision-making to develop a systematic method for applying relational autonomy as a theoretical lens to qualitative health research. The resultant practical guide utilizes Susan Sherwin’s theory of relational autonomy and presents an empirical method responsive to autonomy-relevant questions.
    Type of Medium: Online Resource
    ISSN: 1937-4585 , 1937-4577
    URL: Article
    DOI: 10.3138/ijfab.13.2.09
    Language: English
    Publisher: University of Toronto Press Inc. (UTPress)
    Publication Date: 2020
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  • 8
    Online Resource
    Online Resource
    Cancer patient decision making related to clinical trial participation: an integrative review with implications for patients’ relational autonomy
    Springer Science and Business Media LLC ; 2015
    In:  Supportive Care in Cancer Vol. 23, No. 4 ( 2015-4), p. 1169-1196
    Details
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 23, No. 4 ( 2015-4), p. 1169-1196
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    URL: Article
    DOI: 10.1007/s00520-014-2581-9
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2015
    detail.hit.zdb_id: 1463166-0
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  • 9
    Online Resource
    Online Resource
    Medical Assistance in Dying in patients with advanced cancer and their caregivers: a mixed methods longitudinal study protocol
    Springer Science and Business Media LLC ; 2021
    In:  BMC Palliative Care Vol. 20, No. 1 ( 2021-12)
    Details
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 20, No. 1 ( 2021-12)
    Abstract: The legal criteria for medical assistance in dying (MAiD) for adults with a grievous and irremediable medical condition were established in Canada in 2016. There has been concern that potentially reversible states of depression or demoralization may contribute to the desire for death (DD) and requests for MAiD. However, little is known about the emergence of the DD in patients, its impact on caregivers, and to what extent supportive care interventions affect the DD and requests for MAiD. The present observational study is designed to determine the prevalence, predictors, and experience of the DD, requests for MAiD and MAiD completion in patients with advanced or metastatic cancer and the impact of these outcomes on their primary caregivers. Methods A cohort of patients with advanced or metastatic solid tumour cancers and their primary caregivers will be recruited from a large tertiary cancer centre in Toronto, Ontario, Canada, to a longitudinal, mixed methods study. Participants will be assessed at baseline for diagnostic information, sociodemographic characteristics, medical history, quality of life, physical and psychological distress, attitudes about the DD and MAiD, communication with physicians, advance care planning, and use of psychosocial and palliative care interventions. Measures will subsequently be completed every six months and at the time of MAiD requests. Quantitative assessments will be supplemented by qualitative interviews in a subset of participants, selected using quota sampling methods. Discussion This study has the potential to add importantly to our understanding of the prevalence and determinants of the DD, MAiD requests and completions in patients with advanced or metastatic cancer and of the experience of both patients and caregivers in this circumstance. The findings from this study may also assist healthcare providers in their conversations about MAiD and the DD with patients and caregivers, inform healthcare providers to ensure appropriate access to MAiD, and guide modifications being considered to broaden MAiD legislation and policy.
    Type of Medium: Online Resource
    ISSN: 1472-684X
    URL: Article
    DOI: 10.1186/s12904-021-00793-4
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2091556-1
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  • 10
    Online Resource
    Online Resource
    Seeking to Increase Beneficial Ethics Consultations in the ICU and Beyond
    Ovid Technologies (Wolters Kluwer Health) ; 2014
    In:  Critical Care Medicine Vol. 42, No. 10 ( 2014-10), p. e683-e684
    Details
    In: Critical Care Medicine, Ovid Technologies (Wolters Kluwer Health), Vol. 42, No. 10 ( 2014-10), p. e683-e684
    Type of Medium: Online Resource
    ISSN: 0090-3493
    URL: Article
    DOI: 10.1097/CCM.0000000000000494
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2014
    detail.hit.zdb_id: 2034247-0
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