CANADIAN EXPERIENCE WITH MAID
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)
Abstracts presented May 3, 2018, at the MAiD Research Forum MAiD 2018 in Ottawa
1. Frolic A, Miller P, Swinton M, Oliphant A, Murray L. MAiD to Last: Engaging Health Professionals, Leaders and Physicians to Shift Culture and Create Sustainable MAiD Programs
Background: In 2015, Hamilton Health Sciences (HHS), an academic tertiary care hospital in Ontario, initiated a Readiness Assessment Study to explore the needs and values of clinicians related to assisted dying, anticipating that patients would soon be requesting MAiD. Based on the results, the hospital developed unique infrastructure, policies and a sustainability plan to ensure adequate resources and supports were available to deliver accessible, safe, high-quality MAiD care. These supports extend to include HHS’s inpatients, outpatients, families, and the clinical staff involved in MAID.
Objective: Our second phase of research will assess the effectiveness of the resources/protocols/ infrastructure that have been implemented at HHS over the past 2 years to support MAiD care and identify opportunities for improvement/expansion of MAiD resources and services.
Methods and Analysis: This study employs a mixed method design, including a quantitative, anonymous online survey of over 350 health professionals, physicians and leaders regarding their views of the MAiD program at HHS. Qualitative focus groups with staff and physicians will provide more in depth data about the challenges and opportunities encountered in delivering MAiD care in a tertiary care environment. In addition, interviews are being conducted with the next of kin of patients who received MAiD at HHS, to understand their views of the service. Qualitative data will be analyzed using thematic coding with qualitative data analysis software.
Ethics and Dissemination: Both the Readiness Assessment project in 2015 and the current research project were approved by the Hamilton Integrated Research Ethics Board (HIREB). This research addresses an important gap in understanding how to create high-quality and sustainable MAiD infrastructure within hospital settings (where over 50% of MAiD deaths in Ontario occur). This research will also help identify effective tactics for shifting institutional culture by engaging staff/physicians/leaders in MAiD program development and planning.
Presented by Andrea Frolic, McMaster University email@example.com
2.Dunsford J, Wiebe K. MAID in Manitoba: Describing a Team Approach to the Implementation of a New Clinical Service
Manitoba’s response to the Carter decision was to develop a single interprofessional team of health care providers to design and implement an assisted dying service across the province. The result was a core team that developed, and continues to refine all administrative and clinical processes and policies related to the provision of MAID in Manitoba.
This study aims to describe, from the perspectives of the people involved, how the Manitoba MAID service was established and how it functions. This will serve as a case study for MAID and other kinds of clinical teams, and as a history of the administrative elements of the provision of assisted death in Manitoba.
METHODS AND ANALYSIS
This is a qualitative, case study/ethnography, expected to be completed by May 2018. Data collection includes use of a participant-observer methodology to observe MAID team meetings, with one-on-one semi-structured interviews with willing MAID team members, administrators and regulators involved in the establishment of the team. Textual and document analysis of resources such as guidelines, internal process documents such as policies, and checklists will be examined to provide information on how the team functions, how it has been set up and evolved, and the framework of rules and constraints within which they operate. Meeting and interview transcripts will be analyzed for themes and to establish a description of the process and timeline of the service and its implementation. This will be corroborated and supported by textual analysis of documents.
ETHICS AND DISSEMINATION
The study has been approved by the relevant research ethics boards. Participation is voluntary and participant names and identifying features will be anonymized. Results will be disseminated in the form of conference presentations and submissions to peer reviewed journals, with the collaboration of interested team members.
Presented by Kim Wiebe
3. Fletcher K, Grace M, Watkinson AM. Social Work’s Role in Medical Assistance in Dying
On June 17th, 2016, the federal government introduced legislation legalizing Medical Assistance in Dying (MAID). The change in legislation directly and immediately affected social work, re-storying Canadian social work practice and modalities within a new and unchartered health care provision.
The purpose of this research is to interview social workers across Canada who have been participating in the provision of, or support around Medical Assistance in Dying (MAID). The goal is to better under the experiences of social workers in this role, and to ascertain whether differences in perception and experience exist nationally.
METHODS AND ANALYSIS
To date we have conducted 30-60 minute phone interviews with over fifty social workers from across Canada to better understand their experiences and thoughts on the role of social workers in MAID. Social Workers have been recruited by contacting provincial social work associations and social work practice leads through regional health authorities. Data collection will continue until we reach saturation. After data has been collected, all interviews will be transcribed and coded by four independent raters for themes. Differences and similarities will be tracked by province.
ETHICS AND DISSEMINATION
Participation in this study is voluntary, social workers have been de-identified and information is only linked to the province where they work. Health institutions will not be named in the findings.
This research will be disseminated to all participants, and every provincial/territorial social work association. In an effort to contribute to the national conversation on MAID, data from this study will be also be presented in publications, reports, and conference proceedings, including the Canadian Association of Social Work Education, the Canadian Social Work Journal and Social Work in Health Care.
Presented by Dr. Kara Fletcher, Kara.Fletcher@uregina.ca
4. Wiebe K, Taylor-Brown J, Chochinov H. Early Experiences of Dignity Therapy and Medical Assistance in Dying
Dignity Therapy is a therapeutic intervention developed by Dr. Harvey Max Chochinov and colleagues, based on his research on dignity and end of life care. It involves a conversation about the patient’s life with a health care professional, who has received special training. The conversation is audio recorded, transcribed, and edited. The edited document is then read back to the person who is given the opportunity to make changes/additions before the final version is printed, which becomes a legacy document to be shared with family and loved ones. Several studies have shown the benefits of Dignity Therapy for people facing end of life and for family members.
To explore the feasibility and experience of offering Dignity Therapy to anyone who has had at least one MAID assessment by the Manitoba MAID Clinical Team.
During the MAID assessments, the Manitoba MAID Clinical Team (MMCT) offers Dignity Therapy to almost all patients who have had at least one assessment. Those who express interest are subsequently contacted by a member of the MMCT who has been trained in Dignity Therapy.
Although not the majority, a significant number of those offered Dignity Therapy express interest, and go on to complete legacy documents. Dignity Therapy has also been completed with at least one rural patient using video-conferencing. Although no formal evaluation has taken place to date, anecdotal comments from patients and families indicate that they have found both the process of doing Dignity Therapy and the final permanent document to be meaningful. Both patients and family members have expressed gratitude for the opportunity. There is no evidence to suggest that any patients changed their minds about MAID because of a desire to complete Dignity Therapy although some have shared that they delayed MAID provision after completion of DT as it caused them to want to reconnect with certain people.
Presented by Dr Kim Wiebe firstname.lastname@example.org
5. Miller P, Frolic A, Shadd J, Farag A, O”Donnell C, Pellizzari J, Swinton M, Willison K, Woods A. Exploring Convergence and Divergence in the Practices of MAiD and Palliative Care. (presented by Dr. Paul Miller MD FRCPC Co-Director Medically Assisted Dying Program. Hamilton Health Sciences. Associate Clinical Professor, McMaster University Hamilton, ON. email@example.com)
The emergence of medically assisted dying (MAiD) as a legal option at end of life has resulted in the rapid evolution of a relationship between palliative care (PC) and MAiD providers. Clinicians in the Hamilton region of Ontario came together to develop a shared understanding our “common soil”, specifically how we support people suffering at end of life. Through comparing and contrasting similar qualitative data sets with both MAiD providers and palliative care physicians, we have looked to elucidate the areas of convergence and divergence between the practices of palliative care and MAiD as a way to facilitate collaboration and positive experiences for patients and providers that move between these practices.
The objectives for this presentation are:
• To describe how MAiD practitioners and PC providers portray the relationship between PC and MAiD
• To explore the multiple layers of overlap and distinction, agreement and tension, between PC and MAiD in Canada today
Qualitative research based on in-depth interviews with palliative care physicians, as well as focus groups and interviews with MAiD practitioners in an urban/rural community in Ontario.
Participants characterized the relationship between palliative care and MAiD in a variety of terms, identifying areas of significant commonality as well as difference between the two practices.
The combination of data sets shed light on how palliative care physicians and MAiD practitioners currently understand their evolving roles, values and identities in serving patients and families at end of life. Drawing on rich sources of qualitative data can illuminate the broader discussion that will be required to achieve conceptual clarity about the relationship between the philosophy, culture and practice of palliative care and MAiD.
6. Shaw J, Wright A, Preston E, Harper L, Kelly M, Wiebe E. Perceptions and Experiences of Medical Assistance in Dying (MAiD) within Marginalized Populations (presented by Jessica Shaw U Calgary firstname.lastname@example.org)
There have been concerns about vulnerable people being pressured into choosing an assisted death, however, demographic research from jurisdictions where it has been legal for decades indicates that this is not happening. On the contrary, people who choose an assisted death are most likely white, highly educated, urban, and wealthy. It is important to understand what people who are marginalized know about MAiD in order to both help prevent any pressure to hasten death, and to prevent any barriers to accessing assisted death.
The primary objectives of this study are: to explore the beliefs and experiences of people who are marginalized in relation to MAiD; to understand what questions, concerns, and desires they have about the availability of MAiD and other aspects of end-of-life care; to develop a research relationship with community partners and community members as a basis for future collaboration.
METHODS AND ANALYSIS
This study is an exploratory project with site locations in Vancouver, BC and Calgary, AB. The study is guided by the principles of Participatory Action Research (PAR) which include: that research be driven by and for the community in which it takes place; that research participants are valued as co-collaborators of knowledge; and that research is done to increase education and action on issues of social importance. Potential community collaborators and research participants were recruited through community-based organizations. 48 people were interviewed, interviews were transcribed, and thematic analysis is ongoing.
ETHICS AND DISSEMINATION
As a PAR project, the ethical responsibility of the research team extends beyond institutional obligations to include community participation in the dissemination plan. In addition to writing for scholarly journals, some community-identified outcomes include informational sessions about end-of-life care and the creation of a public memorial that honours people who have died while homeless.
7. Marcoux I, Boivin A, Taljaard M, Graham I. Factors associated with patient requests to hasten death and with related medical practices: preliminary results of a pan-Canadian study with physicians.
Background: Empirical data related to medical assistance in dying are still scarce in Canada.
Objectives: To investigate which factors are associated with patient requests to hasten death and with related medical practices by physicians.
Methods: Data are extracted from a pan-Canadian study on end-of-life practices conducted in 2017 with a random sampling of physicians. A modified Dillman method was used to maximize the response rate and to ensure anonymity. The sampling and recruitment strategies, as well as the questionnaire were tested and refined through a pilot study. Chi-square and t-tests were used to identify factors associated with requests and practices.
Results: Among respondents who acted as the treating physician in the case of a patient who died under their care in the last 12 months, 10% (104/1065) received a patient request to hasten death, and 50% of the latter (52/104) declared having either withdrawn a treatment or used drugs with the intention to hasten death. There was no difference in sex, age and region between patients who made such a request and those who did not, while a difference was observed regarding the main diagnosis (p=0.009) and intensity of pain symptoms in the last week before death (p=0.046). We found differences in frequency of practices intended to hasten death by physician sex (p=0.030) and region of practice (p=0.045), but not by physician’s age and medical specialty. Among patient’s characteristics, only those with higher level of confusion (p=0.005), anxiety (p=0.038) or depression (p=0.005) symptoms were less likely to have a treatment withdrawn or to receive drugs with the intention to hasten death.
Conclusions: Requests to hasten death seem to be mainly driven by the patient’s medical conditions, while related practices intended to hasten death at the patient’s request seem to be influenced by other factors. Explanations will be discussed during this presentation.
Presented by Isabelle Marcoux, Isabelle.Marcoux@uottawa.ca
8. Oczkowski S. Patient, family, and provider perceptions of the quality of care in MAiD: an exploratory mixed methods study
There is an important need to measure the quality of care provided in MAiD to assist with program evaluation, quality improvement, and research. Instruments to evaluate the quality of death and dying in other settings may not be appropriate to use in MAID. Patients, families, and providers of MAiD may have different perspectives on what constitutes “quality” care in MAiD.
To describe patient, family, and provider perceptions of quality of care in MAiD, and their values, needs and preferences for care, and use this information to develop and test an instrument to measure the quality of MAiD care.
Methods and Analysis
We propose an exploratory mixed-methods study with two sequential strands. The qualitative strand of the study will consist of interviews of participants (patients, families, providers) in 30 cases of “MAiD,” recruited from multiple centres across Canada. Using a semistructured interview guide, the interviews will be used to describe participant’s values, needs, and preferences for MAiD , and their perceptions of “quality” MAiD care. Interviews will be analyzed using qualitative descriptive approach, to provide a low-inference description of participants’ perspectives. The planned quantitative strand test the clinimetric properties of a novel instrument to measure the quality of MAiD care, based upon the data obtained in the qualitative strand, in a larger population of MAiD patients and families.
Ethics and Dissemination
Research ethics board approval has already been at two sites (Vancouver and Hamilton), and recruitment is ongoing, with planned completion in April 2019. Study results will be presented at palliative care conferences and submitted for peer-reviewed publication.
Presented by Simon Oczkowski McMaster email@example.com
9. Thorpe L. Multivariate survival analysis of patients requesting MAiD in a University based MAiD program
Background: Medical Assistance in Dying (MAID) is a new process in Canada, so little is known about the outcomes of an initial request. Understanding the age and sex distribution as well as the primary underlying medical illnesses responsible for the requests is important for planning service delivery in the future.
Objectives: To explore demographic and other factors predicting MAiD in patients making an initial request for MAiD to a University based MAiD program.
Methods and analysis: All requests for MAiD have been tracked at Practitioner Staff Affairs at the Royal University Hospital in Saskatoon. Cox regression analysis was used to calculate survival patterns (for eventual MAiD) in patients adjusting for age at initial contact, sex, and the primary underlying medical condition. University ethics approved the project as a quality assurance project so no formal ethics review was mandated.
Results: Older age at first contact (HR 1.03, p=0.011), male sex (HR = 1.94, p=0.35), and underlying medical condition (p=0.008) were significant predictors of eventual MAiD in the survival analysis. Cancer diagnosis was associated with the greatest Hazard Ratio for MAiD outcome, followed by neurodegenerative conditions, then other (including respiratory, cardiovascular and all other).
Discussion and dissemination: Males requesting MAiD are approximately twice as likely to end up receiving this outcome, and the likelihood for MAiD also increases with age. The diagnosis of cancer is the strongest predictor of an eventual MAiD outcome. Results will be presented at a variety of local and national meetings and more detailed results will be submitted for publication.
Presented by Lilian Thorpe firstname.lastname@example.org
10. Chandoke G, Livine O, Oczkowski S. Oncologists and Medical Assistance in Dying: Where do we stand?
With the passage of bill C-14 in June 2016, medical assistance in dying (MAID) was formally enacted into Canadian law.1 Since then, approximately 1300 patients have died with medical assistance across the country, with cancer being the most common qualifying condition.2 With this in mind, we are looking to understand the views and perceptions of oncology providers (OP) with MAID.
Completion of our survey by oncology providers may serve to identify 1) areas which require further education amongst OP, 2) possible barriers to patient access and 3) the role of the OP in patient’s seeking MAID.
Through the administration of a novel anonymous online survey we will obtain baseline demographic information and address three main areas.
1) OP knowledge of MAID
2) OP willingness to engage in the assessment, prescription and administration of MAID
3) OP role in patient pursuit of MAID
This study required a novel survey design. We began with the identification of key constructs for each of the questions listed above, conducted pre-testing with experts, pilot testing and determination of survey validity.
For the demographic data, we will employ descriptive statistics to identify the prevalence of individual factors and to identify prevailing themes. We will utilize Crohnbach’s alpha and corrected item total corrrelations to assess internal consistency of responses within each subscale.3 Lastly, we will utilize logistic regression to determine associations between the demographics and their support for offering MAID.4
This study has been approved by the Hamilton Integrated Research Ethics Board.
This survey will be distributed to a national audience using the SurveyMonkey platform. We have received approval by the Canadian Association of Medical Oncologists to utilize their email list to distribute this survey nationally. Additionally we will plan to reach a national audience of Radiation Oncologists at both academic and community centers.
Presented by Gursimran Chandhoke Hamilton Medical Centre email@example.com
11. Wiebe E, Kelly M, Shaw J, Praslickova Z. The experience of volunteer witnesses for MAiD
BACKGROUND: One of the requirements to be eligible for medical assistance in dying (MAiD) in Canada is that a person must sign a written request and have their signature witnessed by two independent witnesses. These witnesses must not be beneficiaries in the will or be care givers. Since many people at the end of life no longer have appropriate witnesses available, Dying with Dignity Canada (DWDC) has set up a program of volunteer witnesses across Canada to assist.
OBJECTIVES: To describe the experience of DWDC volunteers when witnessing MAiD requests.
METHODS: This is a cross-sectional, mixed methods study including three data sources: Public documents from DWDC describing the program, a survey of volunteer witnesses, interviews with volunteer witnesses. This report will include only the quantitative data from DWDC and the on-line survey. The survey used Qualtrics and the link was sent to all volunteers. The data was exported into SPSS and descriptive statistics obtained.
RESULTS/FINDINGS: There are 155 DWDC volunteers across Canada who have witnessed at least one MAiD request. We had 92 people (59.4%) respond to the questionnaire with 36 from BC, 31 from Ontario, 13 from Alberta and 4 from Manitoba. Their ages ranged from 30-85 years with a mean age of 65.9 years. They had witnessed between 1 and 30 requests with a mean of 6.7 requests. Most (89%) said they had had enough preparation for the work. Twenty-eight (43%) said they had needed to educate staff about the process. In the comments many talked about the importance of support and debriefing. The majority (69%) had been in situations in which humor was used to ease the situation. The majority (97%) found the work rewarding.
CONCLUSIONS: Most of the volunteer witnesses said that the work was rewarding but talked about the emotional and logistical demands.
Ellen Wiebe UBC firstname.lastname@example.org
12. Kelly M, Wiebe E, Shaw J. The Experience of MAiD coordinators
BACKGROUND: Previous studies in Canada have explored the experience of patients, family members and physicians in accessing and providing assisted death but none have investigated the experience of MAiD Coordinators. This new coordinator position was created by various health authorities, and their role is to give information to patients about MAiD, coordinate the patient request forms and the assessments by doctors and nurse practitioners, transfer patients for assessments or provision as necessary, and liaise with facility staff.
OBJECTIVES: The aim of this study is to provide a description of the experience of MAiD Coordinators. Specifically, we are interested in learning about how the Coordinators came to work in this position, and what their experience has been in facilitating requests and assessments for MAiD and supporting the participants through the process. We are also investigating challenges that arise when working with the various people and facilities involved with MAiD provision. Finally, we would like to learn about the impact of being a MAiD Coordinator and the types of support that are both available and needed in this role.
METHODS AND ANALYSIS: This is a qualitative study using semi-structured interviews. MAiD Coordinators in BC will be invited to participate in an interview. Interviews will take place over the phone, by video, or in person and they will be audio-recorded and transcribed. The researchers will code the transcripts and apply thematic analysis in an iterative manner. Consensus will be reached on the major themes, and recruitment will continue until theme saturation has been reached.
ETHICS: The Research Ethics Board at UBC has approved this study.
DISSEMINATION: Each participant will receive a summary of the findings. Preliminary results will be shared at the CAMAP Annual meeting with physicians and coordinators, and final results will be submitted for publication.
Presented by Michaela Kelly University of London email@example.com
13. Newsham T Quality Assurance the first 18 Months of the Manitoba MAiD Team Approach
Background: Medical Assistance In Dying (MAID) in Manitoba is delivered by an interdisciplinary core team of doctors, nurses, and social workers. As part of quality assurance the primary contact of persons who received MAID in Manitoba between March 2016 and August 2018 was contacted by phone by a MAID Social Worker.
Objective: To obtain feedback about the MAID process and experience in Manitoba.
Method: One primary contact was identified for each person who received MAID between March 2016 and August 2018 (total 64). Contacts were identified via chart review, and team input. Contact occurred 6 months post-death and was successful with 38 respondents. The survey involved 22 questions.
Result/Findings: A majority of family members found both the assessment (31/38) and provision (32/38) experiences positive and stated they were “doing well” (32/38) in terms of bereavement. A minority sought counselling following their loved one’s death (6/38). 14/38 respondents felt comfortable fully disclosing their loved one died with assistance, while 13/38 were comfortable telling a “select few”. 11/18 respondents were not comfortable with disclosure. Comfort with disclosure did not change over time (31/38 people felt no more/less comfortable with disclosure months after the death). 26/38 responded that having a loved one die with assistance was “unique”, with 12/38 commenting on the aspect of “control” over the timing and certainty of death, and 12/38 commenting on the reassurance of being present for the death.
While feedback was positive, improvements were made to improve patient/family experiences.
Conclusion: Continuing to obtain feedback will be an essential component of ensuring responsive service to patients and their loved ones who navigate the MAID process in Manitoba.
Presented by Kim Wiebe firstname.lastname@example.org
14. Jokinen, J, Kelly M, Wiebe E, Shaw J Patient and doctor experiences of MAiD refusal
BACKGROUND: Since Canada legalized medical assistance in dying (MAiD) in 2016, doctors and nurse practitioners have been doing assessments and deciding if a patient is eligible according to the law (C14).
OBJECTIVES: To describe the experiences of patients and doctors in the
process of applying for and being found ineligible for MAiD in British Columbia.
METHODS: We used a mixed method design, combining a chart survey with semi-structured interviews within practices of physicians providing MAiD in British Columbia. The chart review included patients who were assessed for MAiD between June 17, 2016 and Dec 17, 2016 in four physicians’ practices. Descriptive statics were applied using SPSS. The interviews included patients who were assessed and the doctors who assessed them between May 2016 and August 2017. Semi-structured interviews were carried out over the phone, by video, or in person by family practice resident investigators. The interviews were recorded, transcribed, and thematic analysis was applied.
RESULTS/FINDINGS: In 271 assessments, 34 people were found to be ineligible. The most common reason for ineligibility was not meeting the requirement that natural death was reasonable foreseeable (18). 8 patients were found ineligible because their diagnosis was primarily psychiatric, and 7 did not meet the capacity requirement. Theme saturation was reached in the physician interviews. All providers found that refusing patients was distressing and spoke about the challenges inherent in the ‘reasonably foreseeable death’ clause, the restrictions on capacity, and the complexity of considering primarily psychiatric patients for MAiD. Several spoke about ways in which they cope with the challenges. The seven patients were quite different from each other and theme saturation was not reached. They discussed the impact of being rejected and the distinction between suicide and MAiD.
CONCLUSIONS: When patients are assessed for MAiD and found ineligible, it impacts both the patients and providers.
Michaela Kelly University of London email@example.com
15. Brown J, Thorpe L, Goodridge D. Assisted Dying and Medical Certificates of Death: An Environmental Scan of Practices
Background: Bill C-14 changed the options patients may choose as part of the end of life process. Consequently, policies and practices have had to be developed to operationalize this new practice area. As health care is delivered at the provincial level, these processes, including reporting systems and the manner MAiD is represented on the medical certificates of death are inconsistent across the country.
Objective: To determine and compile current practices in the completion of the medical certificate of death in Canadian and international jurisdictions related to assisted dying.
Methods and Analysis: Environmental scan process as suggested by Albright (2004) will be followed. Internet searches will be conducted for primary and secondary data sources. For information that cannot be located online, email/phone communication with various agencies will be used to solicit documents and information to address research objective. Data will be sought from the Canadian provinces and territories, the American states of Vermont, Oregon, Washington State, California and Colorado and internationally from Belgium, Netherlands, Switzerland, and Luxembourg. Findings will be collated and the descriptive summary will align back to the project objectives.
Results: Medical certificate of death completion, including cause and manner of death and involvement with death examiners offices varies. Related factors include the assisted death legislation, variation in assisted death terminology and designated oversight agency for assisted dying reporting.
Dissemination: Project results will be shared with internal and external stakeholders to facilitate further planning and policy decision making. Findings will be disseminated in peer reviewed journals, and conferences (abstract and presentation).
Presented by Janine M. Brown, University of Regina, Saskatoon Campus firstname.lastname@example.org
16. Chauhan B. Legalizing death: Lessons on how Canada legislated and operationalized medical assistance in dying
Canada is the latest country to legalize and operationalize medical assistance in dying. It is inevitable that more countries will be doing this in the near future and they will be looking to Canada to help guide their work and navigate them through the legalities and implementation of their legislation. The purpose of this work is to provide a retrospective of what Canada got right and what it got wrong, which will help policymakers and other entities shape their work.
The objectives are twofold: 1) to provide an overview of the legislation in Canada, including what elements of the legislation could be improved in future amendments and 2) and how the implementation of the legislation and subsequent operationalization of it could have been improved.
Methods and Analysis
As this is a new area of focus, there is a limited amount of research available therefore much of the information will be gathered through semi-structured interviews with those involved in the creation of the legislation and implementation, along with legal scholars and providers of MAiD. The interviewees will be from the following areas: 1) development of policy, 2) health clinicians and practitioners, 3) administrators from different organizations involved in operationalizing the legislations and 4) legal scholars. The analysis of the interviews will be done using a qualitative descriptive approach so as to ensure the content and perspectives of the interviewees is accurately captured and retained.
Ethics and Dissemination
It has been deemed that research ethics board approval is not needed for this work. Interviews have already begun and additional subjects will be approached and interviewed as they are identified. The paper will be completed by December 2018 and will be submitted to peer-reviewed journals and shared at conferences. The result of this work will be of benefit for policymakers, administrators and providers of MAiD both in Canada and in countries considering adopting related legislation.
Presented by Barinder Chauhan email@example.com
17. Wiebe E, Kelly M, Green S. CAMAP survey data
BACKGROUND: The Canadian Association of MAiD Assessors and Providers (CAMAP) provides information and support to clinicians, publishes clinical practice guidelines and has an annual meeting with education. The members include the most active medical assistance in dying (MAiD) providers in Canada. In the first two years after the law changed, there has been no national reporting of MAiD data, so we have had to rely on non-standardized reporting from the different provinces.
OBJECTIVES: To describe various aspects of assessments and provisions of MAiD in Canada, especially ones not captured by official reporting forms.
METHODS: An on-line survey link was sent to all CAMAP list-serve members and they were asked to report on their cases. Approval was granted by the research ethics board at UBC.
RESULTS: There is data on 742 assessments of which 107 (14.4%) were found not eligible: 42 (39.3%) for lack of capacity, 39 (36.4%) for natural death not in the foreseeable future and 11 (10.3%) for primarily psychiatric conditions. There were 41 cases in which telehealth was used. There were 397 who had MAiD. Most important reasons given were loss of ability (30.5%), illness-related suffering (28.5%), loss of autonomy (17.9%). There were rituals at the death in 51 cases, varying from religious services to champagne toasts. There was location information on 384 cases: 198 (51.2%) were at home, 117 (30.2%) in hospital, 24 (6.2%) in hospices, 25 (6.5%) in care homes, two in hotels and one on a beach . There were pets present in 17 cases.
The most important value of this study is to point out where more research is needed. We will be able to use this data to combine with qualitative data to help us understand various aspects of MAiD.
Ellen Wiebe UBC firstname.lastname@example.org
18. Beuthin R, Bruce A. Nursing Pioneers in MAiD: Stories of professional, practice and personal impact
Medical assistance in dying (MAiD) represents an historic change in Canadian society. While physicians and NPs assess and directly provide this end-of-life option, nursing practice is also impacted. Background: In one health authority in BC, MAiD deaths represent 3.8% of all expected deaths, a number higher than the national average. Objectives: To understand the range of nurses’ experiences: of providing supportive care for a patient who chose MAiD, of directly aiding, or declining to participate. Methods: A descriptive narrative approach was followed and thematic analysis used. We interviewed 17 nurses from a variety of care settings during the first six months after assisted dying became legal. Findings: Results are organized around three themes: how MAiD impacts nurses’ perceptions and shapes their view of a) the profession, b) clinical practice, and c) personal self. Each theme is supported by storylines that add detail and bring the experience to the reader. Stories from these pioneering nurses illustrate an ongoing sense-making process, determining where they stand, and experiencing a spectrum of emotions that were predominately and surprisingly positive. Some nurses described moral distress as they seek to negotiate what they consider morally wrong. Discussion: Legally assisted death in Canada is unprecedented. Findings reveal how MAiD brings to the fore personal, professional, religious and social values for nurses. While most nurses perceived MAiD as an extension of their nursing, (i.e. to provide holistic care, advocate for patient choice, and to support a good death) we need to understand more fully the moral angst of some, as well as the importance of communicating openly and non-judgmentally with patients. Conclusion: Implications for practice leaders and educators include providing ongoing forums for nurses to talk openly and normalize sense making as a fluid process that may change over time.
Presented by Rosanne Beuthin Rosanne.email@example.com