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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)
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CAMAP Research Grants awarded September 28, 2021 at the Research Forum
CAMAP Research Awards April 2021
1. Medical Assistance in Dying (MAiD) in 2021: Challenges with Track 2 patients and waivers
2. Exploring the experiences and needs of funeral care providers in supporting individuals and families before, during, and after a MAID death
CAMAP Research Knowledge Transfer Awards April 2021
1. Health care providers’ ethical perspectives on using advance consent for Medical Assistance in Dying (MAiD)
2. Dissemination of Findings from a Scoping Review on Grief and Bereavement Needs Following MAiD
Abstracts presented September 26, 2021, at the Virtual MAiD Research Forum
1. Title: Characteristics of older adults accessing Medical Assistance in Dying (MAiD): a descriptive study.
Authors: Selby, Debbie MD FRCP(C); Chan, Brandon BHSc; Nolen, Amy MBBS CCFP(PC)
Background: Medical Assistance in Dying (MAiD) is an end-of-life option for Canadians accounting for 2% of all deaths in Canada in 2019. Adults over 80 represent a significant proportion of these deaths yet little is known about how they compare with their younger counterparts.
Methods: This study retrospectively reviewed our tertiary care institution’s MAiD database to compare MAiD recipients <65, 65-80, >80 years of age. Extracted data included basic demographics, illness characteristics, functional status, social living arrangements/contacts and outcomes of MAiD assessments.
Results: Of 267 patients assessed for MAiD, 38.2% were over 80. Compared to the younger groups, those over 80 were more likely to be female, to live alone and to be widowed; however, they did not self-identify as ‘socially isolated’. The majority fit into the illness categories of malignancy, cardiopulmonary or neurologic diseases, but those over 80 were more likely to have other more chronic/subacute conditions leading to the MAiD request.
Conclusions: Older adults accessing MAiD are distinct in that they tend to be increasingly frail, without a predominant underlying diagnosis as compared with younger adults, but rather have an accumulation of losses resulting in global functional decline and subsequent loss of autonomy and independence.
2. Title: The experience of people with complex chronic conditions (CCC) who have applied for Medical Assistance in Dying (MAiD)
Authors: Ellen Wiebe, Laura Spiegel, Michaela Kelly, Justine Dembo, Clark Fruhstorfer, Jean-Frederic Menard, Rebecca Dickinson
Background: Since March 2021, the MAiD law includes the provisions of Bill C7. Some individuals who have complex chronic conditions (CCCs) and do not have a reasonably foreseeable natural death are now eligible for MAiD. This study aims to give voice to individuals who experience suffering from a CCC and would like to have an assisted death.
Methods: We conducted a qualitative study using semi-structured interviews. We recruited participants who had previously contacted one of four advocacy organizations about requesting MAiD for suffering related to CCCs. The interviews were audio recorded and transcribed. We conducted thematic analysis in an iterative manner with abductive analysis. As interviews were completed, each investigator reviewed the transcripts, and we discussed emerging themes at regular meetings until we reached consensus.
Results: We spoke with 15 individuals who had diverse experiences living with CCCs. All participants spoke of long-lasting suffering that could not be relieved by the numerous treatments they had tried. Many participants were not rushing to have MAiD at the end of their 90-day waiting period. Instead, they shared that being found eligible for MAiD provided validation that their suffering was “real” and gave them a sense of peace and control. All of the participants distinguished between MAiD and suicide and preferred MAiD; some worried about the risk of failing suicide or the implications for their families. Many thought that MAiD would be peaceful and was more accepted in their communities. Purpose and meaning played a role in participants’ ideas about the future. Some participants shared that their ability to engage in their communities gave them hope for the future or contributed to their desire to delay MAiD. Finally, many participants shared that they felt that they were not taken seriously by health care providers in the past. The research interview seemed to have a therapeutic benefit for the participants because they could share the parts of their suffering and experiences that were important to them.
Discussion: Sharing the voices of individuals with CCCs who are seeking MAiD can provide insight for MAiD assessors and providers as they approach assessing individuals with these conditions.
3. Title. ‘She’s going to burn in hell’: Family members’ experiences with guilt, judgment, and
secrecy during the Medical Assistance in Dying (MAID) process in Canada.
Background. Some literature addresses how family and informal supports (F&IS) experience
guilt, judgment and secrecy about MAID, though none details it. 1-6Thus, we know less about the
F&IS experience during the MAID process. After MAID, F&IS are grieving2 and may feel guilty
if they helped plan and/or support a family member’s death. F&IS may deal with judgment from
their family, friends and others and decide to keep MAID a secret. 5 A lack of social support and
secrecy about MAID may exacerbate F&IS grieving process.5-6
Methods. We conducted one-hour semi-structured interviews with F&IS of people who received
MAID in Canada. Nova Scotia recruitment was done by the MAID Access and Resource Team’s
Nurse Navigator. Others were recruited from study advertisements posted by Dying with Dignity
Canada and Bridge C-14.
Results. The majority of F&IS experienced judgment from others, including healthcare
providers, especially if those people were religious. This led to many participants engaging in
some form of secrecy about MAID (e.g., they never told anyone or they selectively told a few
people). A significant number experienced guilt and trauma from being involved in MAID. As
MAID focuses on the patient, family members have little support.
Discussion. There is a need for F&IS MAID resources and support. MAID assessors, providers
and programs should offer support and information to F&IS throughout the MAID process, not
only the patient.
Authors. Jocelyne LeBlanc, Erika Leck MD, Alexandra Malley MD, Ellen T. Crumley PhD.
Contact Information. On behalf of all authors: Jocelyne LeBlanc, email: firstname.lastname@example.org and
Dr. Ellen T Crumley, email: email@example.com.