CANADIAN EXPERIENCE WITH MAID
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Citing article Oct 2020 · CMAJ Open
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20. Sabrina Tremblay-Huet, Thomas McMorrow, Ellen Wiebe, Michaela Kelly, Mirna Hennawy, Brian Sum, The impact of the COVID-19 pandemic on medical assistance in dying in Canada and the relationship of public health laws to private understandings of the legal order, Journal of Law and the Biosciences, Volume 7, Issue 1, January-June 2020, lsaa087, https://doi.org/10.1093/jlb/lsaa087
21. Donna E. Stewart, Pierre Viens, Oviya Muralidharan, Patti Kastanias, Justine Dembo, and Ekaterina Riazantseva.E-Survey of Stressors and Protective Factors
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1. Wiebe E, Sum B, Kelly M, Hennawy M. Forced and chosen transfers for medical assistance in dying (MAiD) before and during the COVID 19 pandemic: a mixed methods study. Death Studies 2021 (in press)
2. Rosanne Beuthin, Anne Bruce, Marney Thompson, A. E. (Betty) Andersen & Sarah Lundy (2021) Experiences of grief-bereavement after a medically assisted death in Canada: Bringing death to life, Death Studies, DOI: 10.1080/07481187.2021.1876790
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8. Oliphant A, Frolic AN. Becoming a medical assistance in dying (MAiD) provider: an exploration of the conditions that produce conscientious participation. J Med Ethics. 2021 Jan;47(1):51-58. doi: 10.1136/medethics-2019-105758. Epub 2020 May 5. PMID: 32371593.
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18. Wiebe E, Kelly M, Lalonde K. Oversight of Medical Assistance in Dying (MAiD) in Canada: A Mixed-Methods Report of What We Have and What We Should Have. Canadian Health Policy, August 2021. ISSN 2562-9492
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CAMAP Research Grants awarded April 21, 2021 at the Research Forum
CAMAP Research Awards April 2021
$1575 Medical Assistance in Dying (MAiD): A Readiness Assessment Study of Healthcare Professionals Impacted by New Legislation (Bill C-7
$3900 The experiences of health care providers with eligible patients’ loss of decision-making capacity while awaiting medical assistance in dying and their perspectives on using advance consent.
Caroline Variath, Elizabeth Peter , Lisa Cranley, Dianne Godkin
$2494.13Mixed Methods Research on Interdisciplinary Support Groups (ISG) for Medical Assistance in Dying (MAID): An Analysis of Promising Practices and Recommendations for Their Implementation
$3937.50 Grief and Bereavement Following Medical Assistance in Dying (MAiD)
Tekla Hendrickson, Mona Kornberg, Sarina Isenberg, Narges Hashemi
$1500 Family and informal supports’ experiences with social support and bereavement during the Medical Assistance in Dying (MAiD) process in Canada: A qualitative study
Ellen T. Crumley, Jocelyne LeBlanc
CAMAP Research Knowledge Transfer Awards April 2021
$2000 Play-Book for Creating, Sustaining and Resourcing a MAiD Bereavement Group
Andrea Frolic, C. Elizabeth Dougherty, Ann Vanderberg, Allyson O
$2300 Assessment of capacity to give informed consent for Medical Assistance in Dying (MAiD): A qualitative study of clinicians’ experience
Ellen Wiebe, Michaela Kelly, Thomas McMorrow, Sabrina Tremblay-Huet, Mirna Hennawy
$2300 Exploring How Family Members Experience Medical Assistance in Dying
Kelly Schutt, Sheryl Reimer-Kirkham, Derrick Klaassen,
Abstracts presented April 21, 2020, at the Virtual MAiD Research Forum
1. Title: Experience with Medical Assistance in Dying (MAiD) when resources are limited: A qualitative study of providers’ experience.
Background: There have been concerns that it may be easier to access MAiD than to get the treatments some people need to control symptoms or get necessary supportive care. Providing MAiD for someone whose unbearable suffering might be relieved by a service they cannot afford could cause ethical dilemmas for providers.
Methods: This was a qualitative study using semi-structured interviews with MAiD providers. We asked participants about their experience in assessing eligibility for MAiD in situations where resources were limited, any challenges or problems they faced and the resources they used. Interviews were conducted in English and French, transcribed verbatim and translated where necessary so that thematic analysis could be done in English.
Results: Most participants were very experienced and they all said they had rarely encountered situations where they felt that the patient might have chosen to live longer if certain services were available. They had encountered situations in which their patient’s suffering had been made worse due to social determinants of health, such as poor housing. Some discussed the issues of isolation and loneliness factoring into the patient’s decision to have MAiD. The main ethical dilemma discussed was that MAiD is not intended to address the failures of society, but, at the same time, individuals have the right to end their suffering.
Discussion: Although our participants had rarely encountered lack of available treatments or services for their patients’ suffering, they recognized that the suffering was sometimes made worse by social determinants of health.
Authors: Ellen Wiebe MD, UBC, Michaela Kelly MSc, Laura B. Spiegel MA, Jean-Frederic Menard LLB, U Sherbrooke, Emily Hawse BA, UBC, Rebecca Dickinson RM
Contact: Ellen Wiebe firstname.lastname@example.org
2. Title: Exploring Age-Standardized MAiD Rates in Island Health Authority
Background: Among the BC Health Authorities (HA), Island HA has consistently had the highest utilization rate (BC range 1.59 – 6.29% of all deaths. 2019). Prior to this study, it was speculated that differences in population age between HA might be responsible for the differences in MAiD utilization rates. Our aim was to calculate age-standardized MAiD mortality rates and extrapolate those rates for comparison.
Methods: Following approval by the Island Health Research Ethics Board (Protocol: H20-00073), we used the direct method for calculating age standardized MAiD mortality rates for Island HA. Data was obtained from the Island HA MAiD database and BC Stats website. We used 5-year age increments for age; however, ages under 45 and ages greater than 91 were aggregated due to small numbers. We used age-standardized rates to predict age-adjusted 2019 MAiD deaths per HA.
Results: There was considerable difference between the actual percentage of MAiD deaths of all deaths and projected percentages for Interior HA (2.97% vs. 5.41%); Fraser HA (1.59% vs. 6.22%); Vancouver Coastal HA (3.58% vs. 7.24%); and Northern HA (2.57% vs. 4.29%). The actual number of 2019 MAiD deaths for BC was 1,280; however, the projected age-adjusted number of deaths was 2,333.
Discussion: We found that differences in population ages between BC HA are unlikely to be a significant reason for the differences in MAiD percentage of deaths. Differences may be due to HA variation in the provision of MAiD services or other population characteristics.
Authors: Karen L. Courtney, PhD, RN, Rosanne Buethin, PhD, RN, Gerry Bliss, BSc
Junko Fukui Innes, MSc Akzana Klepsch
Contact: Karen L. Courtney, PhD, RN email@example.com
3. Title: A qualitative study of families’ experiences with medical assistance in dying (MAiD) in Nova Scotia
Background: MAiD became legal in Canada in 2015, with Bill C-14 in 2016 further delineating eligibility criteria and access to MAiD. Previous research has shown that families are often intimately involved in the decision-making process, with conflicting perspectives regarding how they cope with the medically assisted death.
Our study sought to learn about the experiences of family members going through this process, and to determine what additional supports might be beneficial to the bereaved so as to improve MAiD delivery and aftercare.
Methods: We conducted hour-long semi-structured interviews with 20 family members of individuals who had MAiD. Given Covid-19 constraints, interviews took place by telephone or virtually via MS Teams. Interview transcripts were analyzed using an established iterative coding process and thematic analysis.
Results: Prominent themes emphasized the importance of respecting the individual’s autonomy and decision-making, and allowing them to regain a sense of control, particularly when so much had been taken away by virtue of their illness.
The death itself was often described as peaceful. Interviewees were overwhelmingly filled with relief and gratitude for being able to respect the individual’s wishes.
Interviewees invariably spoke of the importance of support for themselves, and identified a desire to build a network of individuals who have gone through similar experiences, allowing them to share their stories, grieve together, and support the next generation.
Discussion: These results will help to improve MAiD delivery and aftercare in Nova Scotia, by informing, developing and enabling access to resources for individuals who accompany a family member on their end-of-life journey.
Authors: Dr. Erika Leck, Dr. Caitlin Jackson-Tarlton, Dr. Ellen Crumley, Dr. Gord Gubitz
Contact: Erika Leck firstname.lastname@example.org
4. Title: Exploring How Family Members Experience Medical Assistance in Dying Background
Background: Bill C-14 passed into Canadian legislation on June 17, 2016 permitting “…competent adults whose deaths are reasonably foreseeable” to receive Medical Assistance in Dying (MAiD) provided their medical condition is “grievous and irremediable” and causes “enduring and intolerable suffering” (Parliament of Canada, 2016). This study explored how family members experience MAiD, since the 2016 legislation.
Methods: The Listening Guide (Gilligan et al., 2003), a qualitative research methodology rooted in a feminist tradition, was used to listen for the tensions, harmonies, and dissonances experienced by seven family members from across Canada, whose loved ones received MAID. Analysis of in-depth interviews involved listening for story plots within each family member’s narrative and the creation of I-poems, which served to honour the complexity of each participant’s experience.
Results: Analysis revealed that family members experienced tension in negotiating relationship to themselves, to their loved one, and to others involved. These tensions were heard in four voices throughout the study: witnessing, caregiving, honouring choice and supporting dignity, and surrendering and letting go.
Discussion: Current procedures and policies tend to focus on the individual receiving MAiD. Shifting practices to align with relational ethics could challenge healthcare providers to consider how they might support family members. By acknowledging the social context of the patient receiving MAiD, this study extends the discourse surrounding MAiD beyond the realm of individual autonomy, suggesting a shift in care from being patient-focused to being truly personcentred.
Authors: Kelly Schutt, MSN, School of Nursing, Trinity Western University Sheryl Reimer-Kirkham, PhD, School of Nursing, Trinity Western University Derrick Klaassen, PhD, Counselling Psychology, Trinity Western University
5. Title: A Case Series of Completed MAiD Cases for Canadian Prisoners
Background: Since the legalization of medical assistance in dying (MAiD) in Canada, 11 federally incarcerated patients have requested MAiD, and three have received it. This collective case study seeks to describe the process of care as described by three physicians involved in each of the cases that resulted in MAiD provision.
Methods: During the summer of 2020, semi-structured interviews were conducted with physicians involved in each of the three known Correctional Services Canada (CSC) MAiD cases. Transcripts were summarized to focus on details of the care process of each patient.
Results: Case summaries highlight the physicians’ efforts and challenges in assuring patient-centered care. Strengths included: physician concern for equivalency of care and supporting the patient preference of location for MAiD. Challenges included: limited knowledge of CSC guidelines on MAiD; CSC bureaucratic processes that forced longer wait times than typical for patients in the general public; the effect of CSC officers being present during assessment and provision.
Interpretation: Physician experiences illuminate several barriers to care: concerns of voluntariness and confidentiality that are unique to the prison environment, despite internal CSC measures to safeguard against this; patient preference of location for end of life and death was not always known; ethical considerations surrounding the presence of CSC guards, police officers, and handcuffs at the time of assessment and provision, which may influence the ability of a patient to speak freely and can cause distress for all involved.
Authors: Dr. Jessica Shaw, PhD, RSW ,Peter Driftmier