CANADIAN EXPERIENCE WITH MAID

Published Research

1. Bator EX, Philpott B, Costa AP. This moral coil: a cross-sectional survey of Canadian medical student attitudes toward medical assistance in dying. BMC Med Ethics. 2017 Oct 27;18(1):58,017-0218-5.

2. Li M, Rodin G. Medical Assistance in Dying. N Engl J Med. 2017 Aug 31;377(9):897-8.

3. Marrie RA, Salter A, Tyry T, Cutter GR, Cofield S, Fox RJ. High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. 2017 Apr 18;88(16):1528-34.

4. Elie D, Marino A, Torres-Platas SG, Noohi S, Semeniuk T, Segal M, et al. End-of-Life Care Preferences in Patients with Severe and Persistent Mental Illness and Chronic Medical Conditions: A Comparative Cross-Sectional Study. Am J Geriatr Psychiatry. 2018 Jan;26(1):89-97.

5. Robertson WD, Pewarchuk J, Reggler J, Green S, Daws T, Trouton K. Case Review of Medically Assisted Deaths on Vancouver Island. 2017 BC Med J

6. Rosso A, Huyer D, Walker A. Analysis of the Medical Assistance In Dying Cases In Ontario: Understanding the Patient Demographics of Case Uptake In Ontario Since the Royal Assent and Amendments of Bill C-14 in Canada. Acad Forensic Pathol. 2017 7(2): 263-287

7. Khoshnood N, Hopwood MC, Lokuge B, Kurahashi A, Tobin A, Isenberg S, Husain A.Exploring Canadian Physicians’ Experiences Providing Medical Assistance in Dying: A Qualitative Study.
J Pain Symptom Manage. 2018 May 15.

8. Allard J, Fortin MC. Organ donation after medical assistance in dying or cessation of life-sustaining treatment requested by conscious patients: the Canadian context.
J Med Ethics. 2017 Sep;43(9):601-605.

9. Beuthin, R & Bruce, A. Medical Assistance in Dying (MAiD): Canadian Nurses’ Experiences. Nurs Forum 2018:1-10

10. Beuthin R. Cultivating Compassion: The Practice Experience of a Medical Assistance in Dying Coordinator in Canada Qualitative Health Research 2018, Vol. 28(11) 1679–1691

11. Wright, A. C. & Shaw, J. C. (2018). The spectrum of end of life care: an argument for access to medical assistance in dying for vulnerable populations. Medicine, Health Care and Philosophy, (), 1-9.

12. Shaw J, Wiebe ER, Nuhn A, Holmes S, Kelly M, Just A. Providing Medical Assistance in Dying: Practice Perspectives. Can Fam Phys 2018;64(9)e394-9.

13. Holmes S, Nuhn A, Kelly M, Shaw J, Just A, Wiebe ER. A Qualitative Study Exploring the Journey of Supporting a Loved One through a Medically-Assisted Death in Canada Can Fam Phys 2018;64(9)e387-93.

14. Nuhn A, Holmes S, Kelly M, Just A, Shaw J, Wiebe ER. Experiences and perspectives of people who pursued Medical Assistance in Dying (MAiD) in Vancouver, Canada Can Fam Phys 2018;64(9)e380-6.

15. Wiebe ER, Shaw J, Green S, Trouton K, Kelly M. Reasons for Requesting Medical Assistance in Dying (MAiD) Can Fam Phys 2018;64(9)674-9.

16. Wiebe E, Green S, Schiff B. Teaching residents about medical assistance in dying. Can Fam Physician. 2018 Apr;64(4):315-6.

17. Robertson WD, Beuthin R. A Review of Medical Assistance in Dying on Vancouver Island July 2016-July 2018 https://www.islandhealth.ca/sites/default/files/2018-10/MAiD-Report-2016-2018.pdf

18. Crumley ET, Sheppard C, Bowden C, Nelson G. Canadian French and English newspapers’ portrayals of physicians’ role and medical assistance in dying (MAiD) from 1972-2016: a qualitative textual analysis. BMJ Open. (accepted 18 Dec 2018)

19. Brown J, Thorpe L, Goodridge D. Completion of Medical Certificates of Death after an Assisted Death: An Environmental Scan of Practices.
https://www.longwoods.com/content/25685/healthcare-policy/completion-of-medical-certificates-of-death-after-an-assisted-death-an-environmental-scan-of-practice

20. Antifaeff K. Social Work Practice with Medical Assistance in Dying: A Case Study. 2019 Nat Assoc Soc Workers doi:10.1093/hsw/hlz002

21. Reel K. Denying Assisted Dying Where Death is Not ‘Reasonably Foreseeable’: Intolerable
Overgeneralization in Canadian End-of-Life Law. 2019 Canadian Journal of Bioethics

22. Wiebe E, Shaw J, Wright A, Kelly M. Suicide vs Medical Assistance in Dying (MAiD): a secondary qualitative analysis. Death Studies 2019 in press

23. McMechan, C., Bruce, A. & Beuthin, R. (2019). Canadian Nursing Students’ Experiences with Medical Assistance in Dying. Quality Advancement in Nursing Education (5),1 (Article 2).DOI: https://doi.org/10.17483/2368-6669.1179

24. Beuthin, R. & Bruce, A. (2019). Medical assistance in dying (MAiD): Ten Things Leaders Need to Know. Canadian Journal of Nursing Leadership, 31(4), 74-81.

25. Bruce, A. & Beuthin, R. (2019). Medically Assisted Dying in Canada: “Beautiful Death” is Transforming Nurses’ Experience of Suffering. Canadian Journal of Nursing Research. (in process)

Abstracts presented May 30, 2019, at the MAiD Research Forum MAiD 2019 in Vancouver

Bereavement Support: Attitudes and Expectations MAiD Providers
Authors: Konia Trouton, Chloe Lemire-Elmore, Rosanne Beuthin, Helena Daudt, Marney Thompson, Anne Bruce
Contact: Rosanne.Beuthin@viha.ca

Background: Bereavement following MAiD is not fully understood in the Canadian context. Legislation does not require providers of medical assistance in dying (MAiD) to offer bereavement support. While perceived as morally important, healthcare infrastructure does not facilitate this, and physicians providing MAiD are often not the primary care provider. These factors contribute to a potential gap in bereavement support.
Objectives: To explore the current practice, beliefs and expectations of physicians who assess and provide MAiD regarding the bereavement support they offer (or may not) to family/friends of the deceased at the time of and following.
Method: An exploratory QI study using a survey with quantitative and narrative responses. Participants were 18 physicians who had assessed and/or provided MAiD between June 2016 and June 2018 on Vancouver Island; identified from a list developed by the local health authority. Participants were invited via email to complete an online survey. Data were analyzed using descriptive statistics and content analysis. Approval by a HREB was not required.
Results: The majority of physicians believed bereavement associated with an assisted death differs from bereavement with other types of death. Overall, 72 % agree that bereavement information and support are needed prior to the assisted death and 72 % believe they have neither time nor resources to address this. The majority, 78% believe bereavement support is a shared responsibility between the clinician providing MAiD and the family physician. The most common bereavement practices are to refer to community programs and online resources. Participants recommended that a dedicated professional and print materials be made available.
Conclusion: A QI framework allowed us to improve the practice of bereavement support following MAiD. We created an infographic for education purposes and a printed resource for MAiD physicians to share. Findings will inform grant applications for future research in this area.

Incorporating Medical Assistance in Dying (MAiD) Into Health Sciences Curricula
Authors: Janine Brown, Donna Goodridge, Lilian Thorpe
Contact: Janine.Brown@uregina.ca

Background: Medical and health education programs must adapt to the changing end-of-life practice context and equip students with the foundational skills for professional success.
Objectives: Explore the forces influencing MAiD content inclusion into curricula, review the utilized and required resources in MAiD content delivery, and examine the current placement of MAiD content in relation to palliative care (PC) content.
Methods: Cross sectional, exploratory, observational study in one Canadian province using interpretive description and Force Field Analysis. Ten key curriculum contacts were interviewed representing medical, nursing, pharmacy and social work education programs. Verified interview content, interviewer reflections and contextual data were analyzed using the constant comparative method with NVivo.
Results: Key factors that influenced MAiD content inclusion were curriculum delivery structure, resources, faculty comfort and practice context, and uncertainty in the student scope of practice. Of note, medical and pharmacy students were consistently exposed to MAID content due to a high degree of curriculum oversight and specific MAiD course objectives. MAiD content in nursing and social work programs was left to the discretion of the designated faculty in alignment with pre-existing course outcomes. Theoretical and legal concepts of MAiD were more consistently taught than clinical aspects of MAiD related care. Resources required for content delivery included care pathways, accreditation standards, practice experts, peer-reviewed evidence and contextual statistics. MAID content was often delivered within the context of PC but was also included in ethics, legalities and professional regulation courses. Varieties of teaching modalities were used for PC and MAiD content delivery.
Conclusions: Inclusion of MAiD related specific course outcomes is required for consistent content delivery. Faculty development modules may promote consistency and support faculty in introspective reflection. Clarifying student scope of practice in MAiD related care and faculty utilization of CO in the academic milieu is essential.

Continuity of Care in Medical Assistance in Dying (MAID) in Southern Alberta
Dr. Dionne Walsh, Kari Bulger, Rachel McGean, Theresa Fortunaso, Dr. Daren Heyland
Contact: Dionne Walsh: Dionne.walsh@ahs.ca

BACKGROUND – The Alberta Health Services MAID Care Coordination Service strives to support a patient’s own family physician to participate in assessing and/or providing MAID, but the majority of MAID provisions in Southern Alberta are done by physicians who have not provided prior patient care to the individual.
OBJECTIVES
1. Quantify the incidence of MAID assessment and provision by a patient’s own family physician
2. Explore the impact of the physician-patient relationship on both the provider and the family
METHODS
This was a mixed methods study. The assessing and providing physicians for South Zone MAID cases from 2016 – 2018 were categorized as: family physician, other known physician, met at MAID assessment, and met at MAID provision.
Physicians: Focus groups were conducted with physicians who had participated in MAID. A questionnaire was developed and sent to all Alberta Health Services South Zone physicians.
Family: A questionnaire was developed and sent to the next of kin of 2018 MAID patients.
RESULTS
1. Patients had an assessment done by their family physician in 45% of cases.
2. 14% of provisions were done by the patient’s own family physician.
3. Provider responses (8) suggest that providing MAID for one’s own patient improves the experience.
4. 71% of family respondents reported that the relationship with the physician had a very positive impact on the experience. Comments suggest that provision by family physician improves the MAID experience for families: “It was unbelievably comforting that (patient’s) family doctor did the procedure”.

CONCLUSIONS
Few patients actually receive MAID from their family physician. Both physicians and family members appear to have an enhanced MAID provision experience when the patient’s own family physician is involved. Supports need to be developed to encourage more family physicians to become involved in MAID.

Engaging Physicians to Participate in Medical Assistance in Dying in Southern Alberta
Dr. Dionne Walsh, Kari Bulger, Theresa Fortunaso, Dr. Daren Heyland
Contact: Dionne Walsh: Dionne.walsh@ahs.ca

BACKGROUND
The number of monthly MAID provisions in Alberta – South Zone has increased from 1.1 in 2016 to 3.2 in 2018, yet the number of physicians willing to provide MAID has not increased accordingly. This puts at risk both patient access and physician burnout.
OBJECTIVES
1. Understand the reasons that physicians decline to participate in MAID in southern Alberta: intrinsic values versus external factors that could be mitigated by the Care Coordination Service (CCS)
2. Evaluate physicians’ perceptions of the helpfulness of various supports that could be developed by the CCS
3. Evaluate the experience of physicians who have participated in MAID
METHODS
A questionnaire was developed by the Quality Improvement team with consultation from physician focus groups and feedback from physicians both with and without experience in MAID. The questionnaire was sent by email to all South Zone physicians.
RESULTS/FINDINGS
1. 57% of physicians would consider assessing eligibility and 36% would consider providing MAID.
2. Of those who decline to participate, the vast majority make this decision based on moral beliefs (85% for assessment / 75% for provision) and religious beliefs (70%/61%).
3. Of those who are willing to participate, the supports rated most highly included written information and logistic supports. Experiential supports (mentorship, observation) were also rated highly for provision but not assessment.
4. Previous assessors and providers agreed that they were adequately prepared, logistically and emotionally supported, have faced little stigma for their actions, and are willing to continue participating in MAID.

CONCLUSIONS
For those who decline to participate in MAID, it is mainly secondary to their own personal views rather than system constraints. However, there are many physicians who are potentially willing to become involved in MAID. Targeted education supports are being further developed, and logistic supports will continue to be provided by the Care Coordination Service.

Doing Death Differently: Constructing Good Nursing Care in MAiD

Authors: Pesut, B., Greig, M., Thorne, S.
Contact: Barbara Pesut: Barb.pesut@ubc.ca

Background: There is little evidence about what constitutes good nursing care in the context of MAiD, despite the fact that assisted death has been legal in several countries for decades. As a result, nurses in Canada found themselves needing to construct new conceptualizations of good practice as they were called upon to provide care to patients considering or undergoing MAiD. In this two-year study we are conducting a systematic review and qualitative investigation of the policy, practice, and ethical implications of assisted death for nursing.
Objective: To report on the findings from this study that speak to how nurses conceptualized and enacted good nursing care in this new context of MAiD.
Methods: Semi-structured qualitative interviews were conducted with Nurse Practitioners and Registered Nurses to gain an understanding of good nursing care in the context of MAiD. Data was analyzed using Interpretive Description.
Results: Three themes were constructed from the data that focused on how nurses conceptualized and enacted good nursing care in the context of MAiD: orchestrating death, unpredictable impact, and moral labour. Nurses described ways in which they organized and harmonized multiple players to provide a highly patient-centered experience amidst a death that was so different than anything they had experienced previously. The impact of being involved in a MAiD death was highly unpredictable, participants had difficulty explaining their emotional responses, and hence, were sometimes uncertain about how best to cope. Both those in favour, and those opposed to MAiD, found this impact to be life and career changing. Involvement with MAiD often required ongoing moral work of reconciling moral intuitions with reasoning and experience.

Conclusions: Nurses’ contributions to ensuring high quality care in MAiD are significant. As such, developing new models and depictions of good care that articulate the inherent complexities of this way of doing death differently should be an essential focus for nursing practice and research.

Falling through the Cracks: Canadian Nursing Work in the Context of MAiD.
Authors: Pesut, B., Greig, M., Thorne, S.
Contact: Barbara Pesut: Barb.pesut@ubc.ca

Background: Canada was the first country to delegate the authority of MAiD assessment and provision to Nurse Practitioners. Further, evidence from other countries where assisted death is legal, indicates that registered nurses who do not hold the Nurse Practitioner designation also play important roles in ensuring high quality care during an assisted death. In this two-year study we are conducting a systematic review and qualitative investigation of the policy, practice, and ethical implications of assisted death for nursing.
Objective: To report on the findings from this study that speak to the Canadian healthcare context and its interactions with nursing work in MAiD.
Methods: Semi-structured qualitative interviews were conducted with Nurse Practitioners and Registered Nurses to better understand their experiences with MAiD. Data was analyzed using Interpretive Description.
Results: Three main themes were constructed from the data: influential leadership, teamwork, and patient-centered processes. Leaders, particularly those responsible for palliative care, were influential in the degree to which nurses had adequate supports for their practice. Although nurses considered teamwork essential to high quality MAiD care, many nurses worked in isolation. Participants in this study described the complexity of trying to facilitate a MAiD death within a system that was not patient-centered. Nurses struggled to arrange a multitude of details while facilitating whatever was most important to patients during this final event. The resulting workload forced some nurses to reconsider their involvement.
Conclusions: Great variability exists across Canada in the contextual supports provided for nurses in their practice related to MAiD. Good practice supports such as policies, procedures, teams and system processes are essential to nurses’ well-being as they engage in the impactful practice of MAiD.

Use of Telemedicine for MAiD Eligibility Assessments: Impacts on Quality of Care in BC
Authors: Stéphanie Dion, Ellen Wiebe, Michaela Kelly
Contact: Stephanie Dion: stefdion77@gmail.com

Background
Patient’s MAiD eligibility must be evaluated by two independent assessors, which can be complex if they come from remote or rural locations; eligibility assessments may also be time-sensitive. In an attempt to facilitate patient’s access to the service, telemedicine (TM) has been used for MAiD eligibility assessments in BC.
Objectives
This research explores the impacts of using TM for MAiD eligibility assessments on quality of care, from the perspective of patients, support persons, providers and administrators involved in the MAiD process in BC.
Methods
Between June and November 2018, 21 semi-structured interviews were conducted with patients, support persons, assessors and administrators. Quantitative data were analyzed using descriptive statistics. Qualitative data were categorized using the seven dimensions of the BC Health Quality Matrix and then qualitatively analyzed with inductive coding.
Results/findings
TM for MAiD eligibility assessments was highly acceptable for patients, and for most assessors and administrators. Assessors expressed challenges with empathy, eye contact, nonverbal communication and missing contextual factors. Appropriate and less appropriate patient’s characteristics were highlighted for this modality. TM improved access and equity for the patients who received this service; TM was perceived as an effective and efficient way to deliver eligibility assessments. Concerns were expressed by assessors and administrators about privacy and confidentiality when using personal devices and software. Opinions varied on the requirement of a regulated health care professional needing to be in physical attendance with the patient to act as a witness.
Conclusions
TM has potential to expand access to MAiD; quality of care can be met through the use of TM for MAiD eligibility assessments for specific situations and patients. Updated clinical and administrative policies are needed to address barriers to TM access and to best support patients and assessors using this modality.

The provision of medical assistance in dying: a scoping review
Authors: Max Zworth, Carol Saleh, Ian Ball, Gaelen Kalles, Anatoli Chkaroubo, Mike Kekewich, Paul Miller, Marianne Dees, Andrea Frolic, Ellen Wiebe, Simon J W Oczkowski
Contact: Simon Oczkowski: oczkowsj@mcmaster.ca

Background: In 2016 Bill C-14 legislated criteria under which patients could receive MAID in Canada, but did not provide guidance regarding the technical aspects of providing an assisted death.
Objectives: To identify knowledge gaps and areas for future research.
Methods: We conducted a scoping review of the existing literature describing the medications, settings, participants and outcomes of MAID. We searched online databases, clinical trial registries, conference abstracts, and professional guidelines from jurisdictions where MAID is legal, up to June 2017. Eligible reports included technical summaries, institutional policies, practice surveys, practice guidelines and clinical studies that describe MAID provision in adults who have provided informed consent. Two independent investigators screened reports using pilot-tested forms, and collected data using standardized forms.1
Results: The systematic search and grey literature search identified 10107 references and 22 protocols, respectively. 147 articles published between 1992 to 2017 met eligibility criteria. 72 studies described details for MAID administered by IV medications, and 46 provided data on oral medications. In IV protocols, MAID was most commonly administered using general anesthetic such as barbiturates (32/147) or propofol (20/147) followed by a neuromuscular blocker. Oral protocols most often used barbiturates alone (36/147) or with a neuromuscular blocker (13/147), and recommended using a prokinetic agent prior to lethal drug ingestion. Common complications included prolonged duration of dying, difficulty obtaining IV access, and difficulty swallowing oral agents. Most commonly, physicians’ roles were prescribing (71/147) and administering medications (78/147). Nurses occasionally administered medications (17/147) and supported the patient (14/147) or family (13/147).
Conclusions: We identified several trends in MAID provision including common medications and doses, roles of healthcare professionals and families, and complications that may cause distress. Future research should aim to identify the medications, dosages, and administration techniques and procedures, which produce the most predictable outcomes and mitigate distress for those involved.

Inmate Perceptions of Palliative Care and MAiD in Canadian Penitentiaries
Authors: Jessica Shaw, Ellen Wiebe, Michaela Kelly, Erin Levesque, Heather Samarron
Contact: Jessica Shaw: jcashaw@ucalgary.ca

BACKGROUND While the implementation of MAiD for Canadian prisoners is fraught with ethical dilemmas, in order to align with federal policy, stakeholders need to determine how – not whether – MAiD ought to be offered to federal inmates.
OBJECTIVES To understand what obligations the new MAiD legislation places on Correctional Services Canada, and how these obligations can be fulfilled, with particular attention to potential barriers; to understand what inmates know and feel about palliative care and MAiD.
METHODS For this pilot project, in-depth interviews were conducted with nine incarcerated men who were involved with a palliative care program at a Correctional Services Canada institution.
FINDINGS In relation to palliative care in general, participants had limited experience with end-of-life care prior to becoming involved with the prison palliative care program (as either a peer caregiver or as a patient), transitional supports for people being released from prison at end-of-life did not always include reliable community connections, and it was thought that the limited approval of compassionate releases prior to an expected death might contribute to suicidal behavior within prison. It was also determined that inmates had a basic understanding of MAiD, were supportive of MAiD, and were overall supportive of expanding eligibility requirements to access MAiD, such as for mental health reasons. A few inmates discussed the desire for MAiD as an option for people serving life sentences who might want to end their life rather than complete a life sentence.
CONCLUSIONS These findings have policy and practice implications for Correctional Services Canada, and for the physicians, nurses, social workers, and other allied health professionals who work with incarcerated people at end of life.

Perceptions of MAiD Among People Who Are Street-Involved
Authors: Jessica Shaw, Ellen Wiebe, Laura Harper, Emma Preston, Michaela Kelly, Alysia Wright
Contact: Jessica Shaw: jcashaw@ucalgary.ca

BACKGROUND There have been concerns about vulnerable people being pressured into choosing an assisted death, however, demographic research from jurisdictions that have had assisted death for decades indicates that there is not evidence of this happening. It is important to understand what people in marginalized communities know about medical assistance in dying (MAiD) and what they perceive to be issues related to it, in order to help prevent any pressure to hasten death, and to prevent any barriers to accessing assisted death.
OBJECTIVES To explore the beliefs and experiences of people who are marginalized in relation to MAiD and other aspects of end of life care; to continue to develop a research partnership network with community members as a basis for future collaboration.
METHODS At site locations in Vancouver, BC and Calgary, AB, semi-structured interviews were conducted with a purposive sample of 47 individuals who were service users (n=28), peer community leaders (n=12), and formal service providers (n=7). Interviews were transcribed and analysed for themes by an interdisciplinary team.
FINDINGS Participants described the large impact of the opioid crisis on experiences of death. They had a low level of knowledge about end of life options such as palliative care, hospice and MAiD. They identified stigma and lack of autonomy as barriers to accessing end of life supports. They talked about the importance of family, friends and their community at the end of life. Most of the participants supported MAiD, but only when limited to those suffering at the end of life, and did not feel that marginalization resulted in pressure to accept MAiD.
CONCLUSIONS Among people who are street involved, there is a severe lack of knowledge of end of life care options, and where there are palliative care services for people who are street involved, they are limited and under-resourced. Participants did not feel concerned about being pressured to end their lives through assisted death. On the contrary, there were concerns that MAiD would be inaccessible to people who qualified for it because of a life-limiting diagnosis.

Professional Roles in Nova Scotia
Authors: Joel Young, Ellen T. Crumley, Scarlett Kelly
Contact: Joel Young: jl920580@dal.ca

Background: When Canada legalized medical assistance in dying (MAiD) in 2016, new professional roles became available to healthcare providers who elected to participate. Physicians and Nurse Practitioners (NPs) provide knowledge, write prescriptions, and administer pharmaceuticals to qualifying patients. Pharmacists fill prescriptions. Nurses insert the IV and provide support. Administrators help identify locations, manage paperwork, and schedule procedures.
Objective: To describe changes in the professional roles of physicians, NPs, nurses, pharmacists, and healthcare administrators in Nova Scotia (NS) who participate in MAiD. We also explore organizational changes that occurred.
Methods and Analysis: We conducted 24 interviews: 7 physicians (one conscientious objector), 6 pharmacists, 6 nurses (one conscientious objector), and 5 health administrators. Oen-ended questions were used so interviewees could discuss their MAiD experiences. Constant comparison was used to identify patterns and negative cases within and amongst the four professions. Categories and theoretical themes were identified from the analyses. We used exemplary quotes to illustrate professional role change.
Results: Preliminary analyses found that physicians and nurses self-opt into MAiD case-by-case. There is no set MAiD team and most MAiD providers do not have a relationship with their patients. Some professionals experienced significant identity and role change. Professionals said they felt honored to help patients. However, some had minimal MAiD training and all participated in MAiD outside of regular working hours. To date, there is no provincial policy guiding MAiD, although some professions and organizations have created their own. Due to fears about public outcry, MAiD in Nova Scotia (NS) is surrounded by secrecy and many professionals do not share with others that they are participating.
Conclusion: Professional role change legislated by the federal government occurred differently for individual professionals. Most professionals do not view MAiD burnout as an issue. Interviewees mentioned that training and supports for participating professionals are needed.

Exploring Family Members’ Experiences Accompanying their Loved Ones through the MAiD Process
Authors: Andrea Frolic, Leslie Murray, Marilyn Swinton, Allyson Oliphant
Contact: frolic@hhsc.ca

Background In 2016, Hamilton Health Sciences (HHS), an academic tertiary care hospital in Ontario, developed unique infrastructure, policies and a sustainability plan to ensure adequate resources and supports to deliver accessible, safe, high-quality Medical Assistant in Dying (MAiD) care. The key innovation of the program is the Assisted Dying Resource and Assessment Service (ADRAS) team.
Objective: We undertook a comprehensive, mixed-methods evaluation of the HHS MAiD program after it had been in place for 18 months in order to determine if the ADRAS team is delivering accessible, safe and high-quality MAiD care. This evaluation included a qualitative component to explore family members’ experiences with the program.
Methods and Analysis: We conducted semi-structured qualitative interviews with 12 family members of patients who received MAiD to understand their experience with the program. Interviews were digitally recorded, transcribed verbatim and anonymized. Transcripts were analyzed using conventional content analysis with the Qualitative Description approach.
Ethics and Dissemination: This research was approved the Hamilton Integrated Research Ethics Board. The overarching theme of the family interviews is about the success of the HHS MAiD program in meeting the needs of patients and their families facing difficult end of life choices. While family members praised the quality of care provided by the ADRAS team, the majority articulated some frustration with certain aspects of the law governing MAiD, as well as the process for accessing assisted dying.
All family members commented upon the uniqueness of MAiD death and the challenge of coming to terms with their loved one’s choice to end their life in this way, flagging bereavement support as an issue to pursue in future research and program improvement cycles. Results of the study have already lead to significant quality improvements in the practices of the ADRAS team, and the development of community partnerships to support bereavement care for MAiD families.

Family Medicine Preceptor and Resident Perceptions of Medical Assistance in Dying

Authors: Susan MacDonald, Sarah LeBlanc, Daniel Zimmerman, Nancy Dalgarno, Karen Schultz, Emily Johnston, Mary Martin
Contact: Sarah LeBlanc: sleblanc@pefht.com

Background
Medical assistance in dying (MAID) became legal across Canada in June 2016, creating a need for MAID-specific education for practicing physicians and medical learners.

Objectives
This study examined and compared perspectives of family medicine resident and faculty preceptors regarding MAID in terms of interest in and knowledge, experiences, willingness and readiness to learn and/or teach, anticipated participation, and recommendations for curricular content, faculty development and continuing professional development.

Methods
Two anonymous surveys distributed to residents (n=193) and preceptors (n=158) in one Canadian family medicine postgraduate training program using a Dillman approach. Data analyzed with SPSS using descriptive and inferential statistics.

Results/Findings
45.2% of preceptors and 33.3% of residents responded. A low proportion of both preceptors and residents felt competent or comfortable discussing and exploring MAID with a patient, with preceptors feeling significantly more competent and comfortable than residents (P < .001 and P < .01, respectively). Paradoxically, significantly more residents than preceptors were willing to be part of a clinical team providing MAID through oral or intravenous routes (P < .001). In spite of this willingness to be involved, significantly fewer residents felt safe discussing personal perspectives on MAID in various clinical environments (P < .001). Most participants from both groups believed it was important to include MAID in the core family medicine residency curriculum and identified specific curriculum content and delivery strategies. Conclusion Family medicine preceptors and residents are willing and want to learn about MAID. Our research demonstrates a need to integrate MAID into the family medicine residency curriculum, with faculty development and continuing professional development for preceptors. Patients’ access to compassionate end-of-life care can be improved through training that increases both faculty and resident comfort, confidence and competence in the topic of MAID. Patient, family, and provider perceptions of the quality of care in assisted dying: an exploratory mixed methods study
Authors: Simon Oczkowski, Diane Crawshaw, Peggy Austin, Gaelen Kalles, Anatoli Chkaroubo, Mike Kekewich, Paul Miller, Marianne Dees, Katalin Ivanyi, Tejal Patel , Andrea Frolic
Contact: Simon Oczkowski: oczkowsj@mcmaster.ca

Background:
While Bill C-14 specifies eligibility criteria for MAID, it otherwise provides little guidance for how to implement assisted dying in clinical practice. As a result, there is significant practice variation in MAID care across Canada, and little consensus on what constitutes high quality, patient-centred care in MAID.

Objectives: To develop a multidimensional construct of “quality” in the context of assisted dying, based upon the values, needs, and preferences of MAID patients, family members, and healthcare providers

Methods: Qualitative descriptive study of MAID patients, their families, and MAID providers recruited from five Canadian centres. We conducted 1 hour interviews using a semi-structured interview guide. Interviews were transcribed and de-identified for analysis. Two investigators independently analyzed a subset of interviews, and by consensus developed an initial codebook. Secondary coding was used to organize the codes into general themes, describing the values, needs, and preferences of study participants.

Results: We collected qualitative interview data from 14 cases, including interviews with 11 patients, 8 family members, and 11 health care providers. Prominent themes described by study participants included accessibility, autonomy, respect, legacy, education, and safety. These values can underpin a multidimensional construct of “quality” care in MAID.

Conclusions: We described key values, needs, and preferences of MAID patients, families, and health care providers, and developed a multidimensional construct of quality care in MAID.

Ethical Lessons in Assisted Dying: Navigating a Non-binary Path
Authors: Anita Ho, Kim Jameson, Soodabeh Joolaee, and Victoria Panwala
Kim Jameson: kim.jameson@ubc.ca

BACKGROUND: As relatively new legislation, with varied interpretations of eligibility criteria, developing reporting guidelines and administrative processes, MAiD continues to evolve across Canada. Many questions remain unexplored in the research literature, including how palliative care professionals’ experiences and positions are shaped as they navigate the shifting end-of-life (EOL) care landscape.
OBJECTIVES: As professionals at the frontlines of EOL care, our study explores palliative and hospice care professionals’ (PHCPs’) experiences of intersecting personal, professional, ethical, social, and institutional considerations in providing EOL care after the legalization of MAiD.
We explore opportunities, surprises, and challenges PHCPs have encountered in caring for patients who have requested MAiD as well as existing and expected resources to enhance person-centred EOL care and manage these challenges in the new legislative era.
METHODS AND ANALYSIS: Informed by a scoping review of the relevant literature and a content analysis of semi-structured interviews with 25 interprofessional PHCPs working in Greater Vancouver, we explore factors that help support MAiD discussions and care, challenges and dilemmas PHCP encounter, and recommended resources or support required to enhance their ability to provide high-quality EOL care. Despite common binary assumptions regarding care providers’ and institutions’ moral stance for or against MAiD, our participants reveal that the reality of caring for patients who consider or desire assisted dying is ethically complex. This is especially so for PHCPs, who are trained to treat physical, spiritual, psychological, and social pain of life-limiting conditions holistically without hastening or postponing death.
ETHICS AND DISSEMINATION: Findings will inform pathways for professional, regulatory, research, and administrative directions to enhance HCPs’ emotional well-being as they navigate their evolving roles and responsibilities in providing ethically and clinically appropriate EOL care and support for patients and families, including those who consider MAiD.

Social Work’s Role in Medical Assistance in Dying: Findings from A Cross Canada Scan
Authors: Kara Fletcher, Melanie Grace, Ailsa M. Watkinson
Contact: kara.fletcher@uregina.ca

BACKGROUND
Legislation legalizing Medical Assistance in Dying (MAiD) has directly affected the role of social workers across Canada, causing the profession to re-think, re-story, and reflect on current and future social work practice.
OBJECTIVES
The purpose of this research was to interview social workers across Canada who have been participating in the provision of, or support around Medical Assistance in Dying (MAiD). The goal was to better understand the experiences of social workers in this role, and to consider whether differences in perception and experience exist nationally.
METHODS
We conducted fifty-seven phone interviews with social workers from across Canada (8 provinces and 1 territory) to better understand their experiences and thoughts on the role of social workers in MAiD. Social workers were recruited by contacting provincial social work associations and social work practice leads through regional health authorities. Interviews were transcribed and are now in the final stages of analysis using thematic analysis. Differences and similarities were tracked by province.
FINDINGS
The role and level of involvement of social workers in MAiD differed by province and in many cases, by institution. Themes of involvement/lack of involvement, advocacy, personal interest, family support, and professional role confusion emerged.
CONCLUSIONS
Social workers across Canada have varied professional involvement and experiences with MAiD. Experiences varied largely depending on the social worker’s institution, province of residence, and personal interest in joining a MAiD team or receiving additional training. A National conversation on the role and professional expectations of social workers working in the context of MAiD is needed.

Physicians Assessing and Prescribing MAiD: Personal and Emotional Impact
Authors: Rosanne Beuthin, Marie-clare Hopwood, Anne Bruce
Contact: Rosanne.Beuthin@viha.ca

Background: Medical assistance in dying (MAiD) opens uncharted professional territory for many physicians who are extending their practices to include assisting and hastening death for eligible patients. In Island Health, assisted deaths account for 3.6 % of all expected deaths, a rate much higher than in other parts of Canada.
Objectives: (1) To understand the range of physicians’ experience of assessing and/or providing complete care for patients who have chosen MAiD; (2) To explore how physicians are being impacted emotionally and professionally, and 3) To identify perceived gaps in knowledge/skills related to MAiD.
Methods and Analysis: An interpretive description qualitative approach was followed. We interviewed 12 physicians with diverse experience in assessing (N=4) and providing MAiD (N=8). Data were collected through a) audiotaped semi-structured interviews, in-person or by phone (to foster accessibility) and b) from published media narratives of physician experiences.
Findings: Preliminary findings of physicians concerns about emotional impact prior to becoming an assessor/ provider and perceptions arising as experienced assessors and providers will be presented.
Discussion: It is vital we understand what happens for physicians faced with providing care when professionally or personally they may not be certain about their stance. Medical assistance in dying represents an historic change in Canadian society and it is important to understand the impact on physicians who take on the most direct role of all professionals involved.

The Experience of volunteer witnesses for medical assistance in dying (MAiD) requests.
Zuzana Praslickova, Ellen Wiebe, Michaela Kelly
Contact: Ellen Wiebe ellenwiebe@gmail.com

BACKGROUND
Canada’s law on Medical Aid in Dying (MAiD, C14, 2016) requires a written request for MAiD that is witnessed by two independent witnesses. Given that independent witnesses are often a challenge to find for patients at the end of life for various psychosocial reasons, Dying with Dignity Canada created a community of volunteer witnesses to fill this role. As these volunteers are the first of their kind on the global scale, it was important to understand their experiences.

OBJECTIVES To explore the experience, challenges and thoughts on the current system in order to better prepare and support the volunteers, the patients, and their families, and to inform policy.

METHODS This was a cross-sectional, mixed methods study, using:
1. Public documents from DWDC describing the program
2. Questionnaire surveys of volunteer witnesses
3. Interviews with volunteer witnesses to better explore details for recurrent themes.
Descriptive analysis was done with the questionnaire data. The interviews were transcribed verbatim and thematic analysis was done.

RESULTS/FINDINGS All 146 volunteer witnesses were invited to participate in the study. There were 106 completed questionnaires (72.6%) and 24 interview transcripts for analysis.
While the witnesses uniformly agreed that the experience was rewarding and they felt well prepared for the role due to previous life and career experiences and training, they encountered various challenges regarding interactions with various facilities and locations of assessment, the patient’s state of health, distressed family members and communication among the teams involved. The most unexpected finding was the passion with which the majority of participants reported that the requirement for independent witnesses is an intrusive and unnecessary barrier to access MAiD.

CONCLUSIONS The volunteer witness program is functioning well, but mandated independent witnessing causes distress to many patients. This information may inform policy in Canada and help other jurisdictions who may want to set up similar programs.

Interpreting the Medical Assistance in Dying Law (MAiD, C14): The experience of physicians and nurse practitioners
Authors: Ellen Wiebe, Thomas McMorrow, Ruchi Liyanage, Michaela Kelly, Sabrina Tremblay-Huet
Contact: Ellen Wiebe ellenwiebe@gmail.com

Background: The eligibility criteria in Bill C14 leave MAiD clinicians with considerable room for interpretation as to whether a person is eligible for MAiD. It is important to understand how clinicians are interpreting the provisions in Bill C-14 upon which MAiD eligibility assessments are based and how this has change over the 2 ½ years since the law was passed.
Objectives: To examine how clinicians interpret s 241 of Bill C-14 to determine whether a patient has a grievous and irremediable medical condition or fails to meet one of the criteria and is therefore ineligible for MAiD.
Methods: This was a qualitative study using semi-structured interviews and thematic analysis. The interviews were transcribed verbatim and French interviews were translated into English for analysis. The research team met repeatedly to discuss and arrive at consensus about the major themes. Initial participants were recruited from the Canadian Association of MAiD Assessors and Providers (CAMAP) list-serve. Additional clinicians joined the study after hearing of it through word-of-mouth.
Findings: There were 22 video or audio interviews and 2 email interviews, 16 in English and 8 in French. Most of these clinicians had provided MAiD since it was legalized. They all agreed that the provisions used to define a grievous and irremediable medical condition pose interpretive challenges. Most clinicians indicated that they find the requirement that “natural death has become reasonably foreseeable” the most difficult to interpret. To help them interpret the law, they asked advice of their colleagues, used the CAMAP list-serve and clinical practice guidelines and the AB vs Canada judgement. Many reported becoming more liberal in approving cases over the 2 ½ years. Rarely were lawyers consulted.
Conclusions: This study provides a picture of an important aspect of clinical practice and the law-in-action when it comes to the provision of MAiD.

Knowledge and attitude to end of life choices including medical assistance in dying (MAiD) in marginalized indigenous people and health care workers in indigenous communities.
Authors: Jessica Tamura-Wells, Lauren Taylor, Ellen Wiebe, Michaela Kelly
Contact: ellenwiebe@gmail.com

Background: About 4% of Canadians are indigenous, but they are over-represented among marginalized people (socially and financially disadvantaged). There have been no reports of their knowledge and attitude to end of life choices including MAiD in Canada.

Objectives: To explore the knowledge, attitude and experience with end of life choices including MAiD in indigenous people.

Methods: We consulted indigenous elders and peer-driven harm reduction agencies before starting. We recruited participants through urban harm reduction agencies and used the snow-ball technique to recruit health care workers working in indigenous communities. We did semi-structured interviews that were audio-recorded and transcribed. We used an iterative process and theme analysis until we reached theme saturation and consensus about the themes.

Findings: We interviewed 17 self-identified indigenous marginalized people (all urban) and 11 health care workers (mostly rural and indigenous). For the marginalized people, the most important theme was the effects of the opioid crisis and the overwhelming number of recent deaths. There was a poor level of knowledge about end of life choices. MAiD was acceptable to most, but only in terminal cases with severe suffering. Many found health services including hospice and palliative care unacceptable or difficult to access and had experience stigma. The health care workers spoke about the exceptional value of community and family presence at the end-of-life in Indigenous cultures as an overarching theme. We also heard about how difficult it was for rural indigenous people to access palliative care or hospice and that MAiD requests were rare.

Conclusions: Despite much experience with death and dying, most of the indigenous participants who were not health care workers had very limited knowledge of their end of life choices including MAiD. Both rural and urban indigenous people talked about how the family and community would come together and support each other during the dying and grieving process.