Dataset Information

Assessment of capacity to give informed consent for medical assistance in dying: a qualitative study of clinicians' experience.

ABSTRACT:

Background

Under the Canadian Criminal Code, medical assistance in dying (MAiD) requires that patients give informed consent and that their ability to consent is assessed by 2 clinicians. In this study, we intended to understand how Canadian clinicians assessed capacity in people requesting MAiD.

Methods

This qualitative study used interviews conducted between August 2019 and February 2020, by phone, video and email, to explore how clinicians assessed capacity in people requesting MAiD, what challenges they had encountered and what tools they used. The participants were recruited from provider mailing listserves of the Canadian Association of MAiD Assessors and Providers and Aide médicale à mourir. Interviews were audio-recorded and transcribed verbatim. The research team met to review transcripts and explore themes as they emerged in an iterative manner. We used abductive reasoning for thematic analysis and coding, and continued to discuss until we reached consensus.

Results

The 20 participants worked in 5 of 10 provinces across Canada, represented different specialties and had experience assessing a total of 2410 patients requesting MAiD. The main theme was that, for most assessments, the participants used the conversation about how the patient had come to choose MAiD to get the information they needed. When the participants used formal capacity assessment tools, this was mostly for meticulous documentation, and they rarely asked for psychiatric consults. The participants described how they approached assessing cases of nonverbal patients and other challenging cases, using techniques such as ensuring a quiet environment and adequate hearing aids, and using questions requiring only "yes" or "no" as an answer.

Interpretation

The participants were comfortable doing MAiD assessments and used their clinical judgment and experience to assess capacity in ways similar to other clinical practices. The findings of this study suggest that experienced MAiD assessors do not routinely require formal capacity assessments or tools to assess capacity in patients requesting MAiD.

SUBMITTER: Wiebe E

PROVIDER: S-EPMC8084565 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundEven as healthcare providers and systems were settling into the processes required for Medical Assistance in Dying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whose natural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nurse practitioners with the implementation and ongoing development of this transition.MethodsThis qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews with nurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval and all participants provided written consent.FindingsParticipants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID. Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that was increasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID was becoming more accessible, and participants were learning to trust the process. However, the work was becoming increasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree of integration between MAID and palliative care services, there remained ongoing tensions around equitable access to both. Participants described an evolving gestalt of determining persons' eligibility for MAID that required a high degree of clinical judgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to be resourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if persons worried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challenging due to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins of their suffering within a resource-strapped system.ConclusionsSignificant social and system calibration must occur to accommodate assisted death as an end-of-life option. The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigation of a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and those who provide such care require expert communication skills and knowledge of the healthcare system.

Project description:BackgroundBill C-14, the legislation that legalized medical assistance in dying (MAiD) in Canada in 2016, outlines eligibility criteria and includes both a mandated 10-day reflection period and a requirement that the patient have capacity to consent at the time MAiD is provided. We examined clinical factors associated with shortened reflection periods or loss of capacity before provision of MAiD.MethodsThis retrospective database review involved patients who requested MAiD at a tertiary care hospital in Toronto, Canada, between June 2016 and April 2019. We used logistic regression analyses to examine the association between the combined outcome of unanticipated loss of decisional capacity, shortening of the reflection period or death and the clinical risk factors of interest (age, sex, location of MAiD request [inpatient v. outpatient], score on palliative performance scale [PPS] and diagnosis [cancer v. noncancer]). We generated receiver operating characteristic curves to identify the PPS score (encompassing 5 functional domains: ambulation, activity level, self-care, intake and level of consciousness) that best predicted loss of capacity, shortening of the reflection period or death.ResultsIn total, 155 patients requested assessment for MAiD, and 136 of these were included in the statistical analyses. For 68 patients, the reflection period was not shortened; the other 68 patients lost capacity, died or required shortening of the reflection period. In contrast to the results for age, sex, location of request and diagnosis, the PPS score was associated with loss of capacity or shortening of the reflection period (odds ratio 4.63, 95% confidence interval 2.87-8.23, per 10-point decrease in PPS score). PPS scores less than or equal to 40% balanced sensitivity, specificity and negative predictive value while emphasizing sensitivity to prevent false negative errors.InterpretationThe PPS score at the time of MAiD request was strongly associated with loss of capacity or shortening of the reflection period, with lower scores incrementally increasing the risk of these outcomes. For patients with a PPS score of 40% or below, close monitoring is warranted, potentially with plans made to allow rapid provision of MAiD should their clinical condition deteriorate.

Project description:BackgroundInformed consent is an integral component of good medical practice. Many researchers have investigated measures to improve the quality of informed consent, but it is not clear which techniques work best and why. To address this problem, we propose developing a core outcome set (COS) to evaluate interventions designed to improve the consent process for surgery in adult patients with capacity. Part of this process involves reviewing existing research that has reported what is important to patients and doctors in the informed consent process.MethodsThis qualitative synthesis comprises four phases: identification of published papers and determining their relevance; appraisal of the quality of the papers; identification and summary of the key findings from each paper while determining the definitiveness of each finding against the primary data; comparison of key themes between papers such that findings are linked across studies.ResultsSearches of bibliographic databases returned 11,073 titles. Of these, 16 studies met the inclusion criteria. Studies were published between 1996 and 2016 and included a total of 367 patients and 74 health care providers. Thirteen studies collected data using in-depth interviews and constant comparison was the most common means of qualitative analysis. A total of 94 findings were extracted from the primary papers and divided into 17 categories and ultimately 6 synthesised findings related to: patient characteristics, knowledge, communication, the model patient, trust and decision making.ConclusionsThis qualitative meta-aggregation is the first to examine the issue of informed consent for surgery. It has revealed several outcomes deemed important to capture by patients and clinicians when evaluating the quality of a consent process. Some of these outcomes have not been examined previously in research comparing methods for informed consent. This review is an important step in the development of a COS to evaluate interventions designed to improve the consent process for surgery.RegistrationThe study protocol was registered on the international prospective register for systematic reviews (PROSPERO ID: CRD42017077101).

Project description:Aims and objectivesTo describes nurses' moral experiences with Medical Assistance in Dying in the Canadian context.BackgroundNurses perform important roles in Medical Assistance in Dying in Canada and do so within a unique context in which Medical Assistance in Dying is provided through healthcare services and where accessibility is an important principle. International literature indicates that participating in Medical Assistance in Dying can be deeply impactful for nurses and requires a high degree of moral sense-making.DesignA qualitative interview study guided by Interpretive Description using the COREQ checklist.ResultsFifty-nine nurses from across Canada participated in the study. The decision to participate in Medical Assistance in Dying was influenced by family and community, professional experience and nurses' proximity to the act of Medical Assistance in Dying. Nurses described a range of deep and sometimes conflicting emotional reactions provoked by Medical Assistance in Dying. Nurses used a number of moral waypoints to make sense of their decision including patient choice, control and certainty; an understanding that it was not about the nurse; a commitment to staying with patients through suffering; consideration of moral consistency; issues related to the afterlife; and the peace and gratitude demonstrated by patients and families.DiscussionThe depth of nurses' intuitional moral responses and their need to make sense of these responses are consistent with Haidt's theory of moral experience in which individuals use reasoning primarily to explain their moral intuition and in which moral change occurs primarily through compassionate social interaction. Further, work on the moral identity of nursing provides robust explanation of how nurses' moral decisions are contextually and relationally mediated and how they seek to guard patient vulnerability, even at their own emotional cost.ConclusionMedical Assistance in Dying is impactful for nurses, and for some, it requires intensive and ongoing moral sense-making.Relevance to clinical practiceThere is a need to provide support for nurses' moral deliberation and emotional well-being in the context of Medical Assistance in Dying care.