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14. Andrea Frolic3, Marilyn Swinton, Allyson Oliphant, Leslie Murray, Paul Miller. Access Isn’t Enough: Evaluating the Quality of a Hospital Medical Assistance in Dying Program. August 2022 HEC Forum DOI: 10.1007/s10730-022-09486-8
15. Serge Daneault, Mehdi Azri, Deborah Ummel, Sylvie Gendron. Non-somatic Suffering in Palliative Care: A Qualitative Study on Patients’ Perspectives. March 2022 Journal of Palliative Care 37(9):082585972210834 DOI: 10.1177/08258597221083421
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CAMAP Research Grants awarded June 1, 2022 at the Research Forum
1. Evaluating The Medical Assistance in Dying (MAiD) Program from a Patient’s and Family’s Perspective across Vancouver Coastal Health Authority (VCH) $2,927.81 Felor Javadi Bashar et al
2. Use of palliative sedation over time: a mixed-methods study of palliative care providers $1,125.00 Amy Nolen et al
3. Exploring Medical Assistance in Dying (MAiD) Utilization Variability in British Columbia $2,500.00 Rosanne Beuthin et al
Abstracts presented June 1, 2022, at the MAiD Research Forum
#1 – Trouton, Konia
Work in Progress
Title: Best Modalities for End-of-life Communication Learning
Background: Healthcare providers in Canada are facing an ongoing need for education in End-of-life (EOL) communications to support patient-centered care. In particular, with the decriminalization of assisted dying, more clinicians seek some enhanced skills in end-of-life conversations. A variety of tools and training initiatives have been created in the field to assist. Yet, little is known about the usefulness of those interventions to clinicians and patients.This literature review aims to highlight the most effective modalities for continued practitioner education in EOL communications with the patients and families, so that the lessons learned can be applied to teaching initiatives that include MAiD.
Methods: An extensive search of literature was performed, focussing on English language publications from 2011-2021. Publications were analyzed by rapid review, and discarded if not relevant. The remaining studies were categorized by type of learner, method of teaching, involvement of patients/families, and long term follow up. These sections were analyzed for pearls for future initiatives. Preliminary findings: The communication training varies through disciplines, as does quality of the programs. To date, there is no standard EOL conversations curriculum for practitioners. Very few programs test their impacts on patient care. Many were created out of urgency, their longer-term benefits are under-reported. Mid-career professionals have fewer opportunities for education than early-career. Criteria for outstanding programs appear to be those strong design, well-measured efficacy, many incorporated interdisciplinary and/ or experiential learning, assessed learners’ progress long-term, and some engaged care recipients’ perspectives. These studies could serve as concepts towards building a
national EOL communications curriculum, as well as inspiring examples of effective training and responsible research.
Authors: *Konia Trouton, MD MPH FCFP, Clinical Professor, Department of Family Medicine UBC &
Brittany Clark, B.A, B.SW., Victoria Hospice Education and Research
Jolanta Vaitekonyte, B.A., Victoria Hospice Education and Research
#2 – Serota, Kristie
Research in Progress Abstract:
CAMAP Research Forum Program Submission
Title: Life after MAiD: Loved ones’ stories of disagreement and bereavement
Background: International research finds that family conflict and disagreement impact loved ones’ grief and bereavement experiences following medical assistance in dying (MAiD). Loved
ones who are less supportive of the MAiD decision or more passively involved in the process may experience more significant moral dilemmas and challenging grief than those with active
involvement. The fear of stigma can result in selective disclosure of the cause of death, secrecy, social isolation, and disenfranchised grief. A lack of social support may compound grief and
mental health challenges following MAiD. This is the first study to examine how disagreement impacts MAiD bereavement in Canada.
Methods: This qualitative research project uses poststructural narrative inquiry. We are conducting 15-20 interviews with bereaved loved ones across Canada. Data is being discursively
analyzed to examine constructions of power, resistance, and agency in participants’ stories. Quilting is being used as a creative analytic practice to represent salient themes and as a medium
for knowledge translation with public audiences.
Ethics: This study has been approved by the University of Toronto’s research ethics board. Implications & Dissemination: Findings from this study may inform future research, clinical,
and regulatory directions that can enhance loved ones’ well-being as they navigate MAiD bereavement. We will contribute to the continued improvement of publicly available MAiD
bereavement resources. Findings can inform resources for clinicians to help families navigate conflict or disagreement about MAiD. Finally, this research may be used to inform future
policies and resources regarding family involvement in MAiD in Canada and abroad.
MA, PhD Candidate
Dalla Lana School of Public Health and the Joint Centre for Bioethics
University of Toronto
#3 – Haegedorn, Kathryn
Title: Provider experiences using waivers of final consent for Medical Assistance in Dying
(MAiD) in Canada
Background: In March 2021, the Canadian MAiD law was amended so that individuals who have been assessed and approved for MAiD, and have a reasonably foreseeable natural death, can
use a waiver of final consent. Canada is the only jurisdiction with this option. This study aims to understand the experience of MAiD providers using waivers of final consent during the first
year of use.
Methods: This is a qualitative study using semi-structured interviews. MAiD providers were contacted by CAMAP and invited to participate. Interviews were conducted by phone or video.
The interviews were audio-recorded, transcribed verbatim and anonymized. Data collection and analysis was done in an iterative manner. Recruitment for the study is ongoing and will
continue until theme saturation is reached.
Results: Overall, participants were relieved to have the ability to use waivers of final consent. Many reported difficulty in explaining the waiver to patients and felt that consenting to a
waiver required more capacity than consenting to MAiD. In some cases, there was confusion for patients and families about the difference between a waiver of final consent and an advanced
directive, and this resulted in distressing conversations.
Discussion: Though new challenges have resulted from the use waivers, most participants agree that waivers are a useful and important addition to their MAiD practice.
Implications: Our findings identify challenges that providers experience when using waivers of final consent and the solutions that they implement to improve the process. This will help to
increase the usability of waivers among providers and improve patient care.
#4 – Kelly, Michaela
Title: Clinician experiences assessing and providing MAiD for individuals without reasonably
foreseeable natural death
Background: In March 2021, the Canadian MAiD law was amended so that some people who do not have a reasonably foreseeable natural death may now be eligible for MAiD. Working with
these patients (Track 2 patients) is a new area of medical practice. This study aims to understand the experience of MAiD providers during the first year of the amended law.
Methods: This is a qualitative study using semi-structured interviews. MAiD providers were contacted by the CAMAP administrator and invited to participate in a phone or video interview. Interviews are audio-recorded and transcribed verbatim. Data collection and thematic analysis is done in an iterative manner. We aim to speak with 20 participants (8 completed to date), and recruitment will continue until we reach theme saturation.
Results: All participants felt that assessing Track 2 patients was time-intensive and sometimes emotionally taxing. Participants shared that a patient’s young age or concurrent mental illness
can make Track 2 cases particularly challenging. Many had experiences in which a Track 2 patient had not received adequate care prior to their MAiD assessment, and participants had
different approaches to this. Some became the primary care provider, most referred to other clinicians and some refused to assess until the patient had been assessed and treated by the
Discussion: Assessing and providing MAiD for individuals without a reasonably foreseeable natural death has led to new challenges for clinicians. There is wide variability in how clinicians
approach these challenges.
Implications: These findings can inform education for the CAMAP membership about approaching MAiD assessment for Track 2 patients.
#5 Fitzsimmons, Kate
Title: Challenges in recruiting and retaining assessors and providers of Medical Assistance in
Dying (MAiD) in Canada
Background: Canadians have had the right to an assisted death since 2016, but exercising this right depends on willing clinicians being available to provide MAiD. In 2020, MAiD deaths
accounted for 2.5% of all deaths in Canada. Assessors and providers have expressed concern about increasing workloads and program sustainability.
Method: We conducted an online questionnaire of MAiD assessors, providers and coordinators/navigators. The questionnaires included open and closed questions about
workloads and how to keep MAiD sustainable. We collected demographic information about province, MAiD experience, and whether they are physicians or nurse practitioners. Descriptive
analyses were performed on the quantitative data and qualitative comments were analyzed to provide context.
Results: There were 78 MAiD providers (68 MDs and 10 NPs), 7 assessors, and 5 coordinators who responded to the survey from 9 provinces and territories. The clinicians ranged in age from
29 to 84 years, and 43.5% plan to change their workload in the next five years. Of these, 32.4% intend to decrease or stop their MAiD work. A high workload burden, insufficient
compensation, and a lack of administrative support were the main reported barriers to continuing participation in MAiD provision and assessment. Four (80%) of the coordinators
stated they had too few clinicians, and the wait times ranged from 0-12 weeks for Track 1 patients and from 0-40 weeks for Track 2 patients.
Discussion: These findings support concerns previously expressed by clinicians regarding
personnel retainment and program continuation.
Implications: The results can help CAMAP and its members improve the sustainability of MAiD
Dr. Ellen Wiebe – email@example.com