Oversight of Medical Assistance in Dying (MAiD) in Canada: A Mixed-Methods Report of What We Have and What We Should Have
Ellen Wiebe, MD, University of British Columbia, Department of Family Practice
Michaela Kelly, MSc
Kaity Lalonde, MD, University of British Columbia, Department of Family Practice
ABSTRACT
Objectives: Medical assistance in dying (MAiD) has been legal in Canada since 2016. The federal government regulates reporting of MAiD, but not oversight. Health care is a provincial responsibility, so each province or territory has different protocols for the monitoring and oversight of MAiD and there are various levels of oversight across Canada. The objectives of this study are to understand the current oversight practices and the views of stakeholders about what should be implemented. Methods: We used a mixed-methods design with the following components: a review of current oversight practices based on provincial and federal websites and interviews with key informants; an online survey of MAiD providers, which asked about the problems with and best practices for MAiD oversight; and a Survey Monkey panel survey of the general public over 50 years of age, which described the current oversight of MAiD and asked about what would be the best oversight. Results: Current practices ranged from reporting (no oversight) in some provinces to review by an interdisciplinary committee (true oversight) in others. Most MAiD providers were satisfied with the level of oversight within their provinces. The general public were more likely to favour true oversight by an interdisciplinary committee before or after provision of MAiD. Conclusions: The policies about oversight of MAiD in Canada must consider the perceptions and preferences of both MAiD providers and the general public. This report gives policy makers the information required to have informed discussion about MAiD oversight in Canada.
Submission: July 13, 2021 | Publication: August 16, 2021
DISCLOSURES: The authors have no potential conflicts of interest to declare.
ACKNOWLEDGEMENTS: This project received financial support from the Peter Wall Institute of Advanced Studies and the Canadian Association of MAiD Assessors and Providers.
CITATION: Wiebe, E et al (2021). Oversight of Medical Assistance in Dying (MAiD) in Canada: A Mixed-Methods Report of What We Have and What We Should Have. Canadian Health Policy, August 2021. ISSN 2562-9492 www.canadianhealthpolicy.com
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OBJECTIVES
Medical assistance in dying (MAiD) has been legal in Canada since 2016 and occurs when a doctor or nurse practitioner provides or administers medication that intentionally brings about a person’s death, at that person’s request (Government of Canada, 2016, 2020). Monitoring and oversight of MAiD may be considered two separate processes. As of November 1, 2018, new federal regulations are in place for “monitoring” but this only regulates reporting (Government of Canada, 2018). Actual oversight would include not just reporting, but also having an expert body adjudicating whether each case was performed according to the law. Health care is a provincial responsibility and the MAiD law did not direct the provinces to provide oversight.
In order to have a knowledgeable discussion about the best practices in oversight of MAiD in Canada, we need to (1) understand what is currently being done, both in Canada and internationally and (2) understand the views of stakeholders, such as MAiD providers and the general public, about the best practices in MAiD oversight. There is currently no literature that discusses MAiD oversight in Canada. The objective of this study is to gather this information in order to inform conversations about best practices and policy development.
METHODS
A mixed methods design was used to allow for contextual analysis of data from multiple stakeholder groups. We performed a scoping review of oversight practices and conducted two surveys in different groups.
Data Collection
For the scoping review, KL and MK accessed the Canadian provincial and federal websites that describe MAiD and interviewed key informants to collect information about current practices in oversight between November 2019 and January 2020. We identified the key informants through contacts in the monitoring and oversight bodies in each province and territory of Canada as well as in the international jurisdictions. For example, the key informants included staff from the Coroner’s office of Ontario and the MAiD Oversight Office in the Ministry of Health of British Columbia. We shared the interview guide with the providers on the Canadian Association of MAiD Assessors and Providers (CAMAP) list-serve for review and incorporated their feedback. In addition to asking what is currently done in each jurisdiction, we also asked about any problems the informants had experienced or observed and about what they believe to be the best practices for oversight (APPENDIX 1). We conducted these interviews by email, phone or video. During the phone and video interviews, the interviewer recorded the key informants’ responses in an interview log. The phone and video interviews were also audio-recorded but were not transcribed verbatim. The audio-recordings were used to verify responses that were tabulated. The tabulated responses were stored on a secure website so that the team could review them in real time and give suggestions about changing or adding questions to explore certain issues more fully. All three researchers helped assemble the information into a useful table.
In addition, we used Qualtrix, an online survey program, to administer a 5-question survey to MAiD providers who participate in the CAMAP and La Communauté de Pratique AMM-Quebec (CPAQ) list-serves in February 2020. These list-serves are the most well-used national forums for discussion among MAiD providers in English and French. In the short survey, we asked the MAiD providers what they considered to be the problems with and the best practices for MAiD oversight (APPENDIX 2).
We presented the preliminary results of the scoping review and survey of MAiD providers at a CAMAP webinar in September 2020. In the discussion with MAiD assessors and providers that followed this presentation, we identified that public perception and belief about monitoring and oversight of MAiD was also an important area to investigate. We then used Survey Monkey Audience to conduct an online panel survey in October 2020. Survey takers were randomly selected by Survey Monkey from their pool of participants based on the demographic features that we requested. SurveyMonkey has a panel in Canada of about 500,000 people willing to participate in a variety of surveys. For each survey that a participant completes, Survey Monkey donates $0.50 to a charity of their choice. We purchased a panel of 300 people who were at least 50 years old, balanced by gender with no other inclusion or exclusion criteria. This sample size allows for a 6% margin of error. The survey described the current oversight of MAiD in Canada and around the world and asked the participants about what they think is the best oversight for Canada. The questions were similar to the ones we asked the providers but differed slightly for clarity (APPENDIX 3). We also asked about the participants’ demographics including age, education and province and about their attitude toward assisted death. The attitude question was “Do you think physician-assisted death should be available to patients with serious diseases, illnesses, or disabilities that cannot be cured and who cannot tolerate their suffering?” This question has been validated in previous research (DePoy & Gitlin, 2015).
Data Analysis
We exported the data from both surveys into SPSS (IBM Statistical Package for Social Scientists version 25), and we used descriptive statistics to describe the quantitative data (DePoy & Gitlin, 2015; Saunders et al., 2012). The information from the scoping review provided context for the survey results. We compared and contrasted the findings from the surveys in the two stakeholder groups.
Ethics
The survey among MAiD assessors and providers was anonymous, and participants were able to respond without using identifying information. The data we received from Survey Monkey from their pool of participants contained no identifying information. All data and research documents were stored on Workspace, University of British Columbia’s secure server. This study was granted ethics approval by the Research Ethics Board at the University of British Columbia (H19-03068). The survey among MAiD providers was also approved by the CAMAP Research Committee.
RESULTS
The scoping review revealed the wide variety of monitoring and oversight in the jurisdictions with legalized assisted dying (TABLE 1). There were 14 key informants who were able to provide information and context to help us interpret the wide variety of practices. Health care is a provincial responsibility and only two provinces passed laws about oversight: Ontario and Quebec (Medical Assistance in Dying Statute Law Amendment Act, 2017, 2017; Quebec, 2017). Across the rest of Canada, oversight of MAiD varies but is mostly complaint-driven because that is the way that the licencing bodies, the Colleges of Physicians and Surgeons and Nurses in each province, regulate practice. Their mandate is to ensure that the doctors and nurses who had complaints against them have not practiced “in a manner that is incompetent, unethical or illegal” and their “overriding interest is the protection and safety of patients” (College of Physicians and Surgeons of British Columbia, 2021).
In other countries with legalized assisted dying, there are a variety of oversight practices. None of the 10 jurisdictions in the United States have an oversight body, although most, like Oregon, require reporting (Public Health Division, Center for Health Statistics, 2018). The Netherlands have their Regional Euthanasia Review Committees perform both monitoring and oversight (Regional Euthanasian Review Committee, 2017). In Switzerland, there is no central reporting and statistics are based only on death certificates (Nicole Steck et al., 2018).
There were 85 respondents for the provider survey: 60 in English and 25 in French; 33 were from Ontario, 26 from Quebec, 15 from British Columbia, 3 from Saskatchewan, two each from Manitoba and New Brunswick and one each in Alberta, Prince Edward Island, Yukon and Nova Scotia (TABLE 2). We recruited from list-serves with about 250 members, and approximately 34% of the members responded to the survey. Most (64.7%) providers were satisfied with the current oversight in their own provinces. There was no difference in level of satisfaction between the different oversight categories (p=0.155) (TABLE 3). Most providers preferred no oversight; only 22.1% wanted true oversight by an independent body (TABLE 4).
For the public survey, there were 301 respondents screened to be over the age of 50 years and balanced by gender (TABLE 5). Their median age was 62.6 years. There were 231 (76.7%) who reported that they were born in Canada and 49 (16.3%) who reported usually attending religious services weekly. There were 153 (50.8%) who reported more than 14 years of education. The majority (n=238, 79.1%) agreed that physician-assisted death should be available to patients with serious diseases, illnesses, or disabilities that cannot be cured and who cannot tolerate their suffering. Individuals who said they attended religious services weekly were less likely to agree with assisted death than individuals who did not attend weekly services (86.1% compared to 42.9%, p<001). When asked which type of MAiD oversight they preferred, only 26 (8.6%) thought no routine oversight was needed, 151 (50.2%) thought one of the current types of oversight in Canada (oversight after the death) was best and 111 (36.9%) thought cases should be reviewed before medications are dispensed (as in Australia) (TABLE 6).
DISCUSSION
This paper provides useful information for agencies discussing the best practices for monitoring and oversight of MAiD in Canada. We reviewed current practices in Canada and in other jurisdictions that have legal assisted death. We surveyed Canadian providers of MAiD and a sample of Canadians in the general public about what they thought were best practices.
There are historical and political reasons for the wide variety of types of oversight in different jurisdictions. For example, in Switzerland, the national criminal law legalizing suicide in the 1940s also legalized assisting suicide (Hurst & Mauron, 2003). There was no precedent for legal medical assistance in dying and this may be why it has been left to the police to ensure that no crime has been committed and left to the individual cantons to regulate the physicians. In the United States, each of the 10 jurisdictions with legal assisted dying have very similar laws based on individual human rights. There were 14 years between the passing of Oregon’s law in 1994 and the passing of the law in the next state, Washington, in 2008. It is likely that the other states copied the model in Oregon. In Australia, there have been many unsuccessful attempts to pass assisted dying laws (White & Willmott, 2018). This may be why they have the most stringent oversight with each case reviewed before the prescription is authorized.
It is not surprising that many of the Canadian providers we heard from prefer no oversight because there is increased work and stress involved in complying with the requirements and dealing with oversight bodies (Shaw et al., 2018). Although oversight differs from province to province, most providers were satisfied with the oversight or lack of oversight that was provided in their own provinces. This is likely because they had adjusted to it.
The members of the public that we surveyed wanted more oversight than there is currently and more oversight than the providers wanted. The providers in our survey were mostly satisfied with the monitoring and oversight in their own provinces, and this indicates that it is likely providers would accept more oversight in those provinces that did not have any, even though only 22.1% thought that oversight by an independent body was best. This is in contrast to the public, of whom 87.1% favoured oversight by an independent body. The public were given the choice to select the type of oversight used in Australia, that all cases should be reviewed by an independent body before the procedure, and 36.9% thought that this type of oversight was best.
There is theoretical benefit to oversight to ensure the law is followed, but there is little evidence to confirm this potential benefit. For instance, jurisdictions with oversight, such as the Netherlands, report only a few incidents of clinicians not following the law (Regional Euthanasian Review Committee, 2017), but there is no data to compare this to. It is not possible to determine if the lack of oversight in the United States has caused harm since there is no data. For this reason, investigating the impacts of oversight of MAiD is challenging; meaningful comparisons cannot be made without incident data from multiple jurisdictions with differing oversight models. Oversight is also only one component of the multiple requirements and safeguards in each jurisdiction such as the age requirement, waiting period and peer consultation (Mroz et al., 2010), and its potential benefits should be interpreted within those contexts as well.
LIMITATIONS
Survey panels must be interpreted with caution because they are sampled out of only the people who signed up to be survey takers for one company and may not be representative of the general population. In this case, the survey was sampled from approximately 300,000 people in Canada who are part of Survey Monkey. In order to assess the generalizability of the findings from the public survey, we asked respondents about demographic factors associated with requesting MAiD and attitude toward MAiD, namely age, gender, education, religiosity and immigration status (Downar et al., 2020; N Steck et al., 2014). We found that the demographic factors of our sample were similar to that of the general Canadian population over 50, but it was challenging to make exact comparisons. In our study, 16.3% attended religious services, which is slightly lower than the 21% of Canadians 15 years and older who reported attending weekly religious services in the 2005 National Household Survey (Statistics Canada, 2008). In 2018, 87% of Canadians aged 55-64 years, and 92% of Canadians aged 45-54 had more than 12 years of education (Statistics Canada, 2021), which is comparable to our sample in which the mean years of education was 14.9. Additionally, in our sample, 23.3% were born outside of Canada, which is slightly higher than the 21.9% of the population who reported that they were or had been a landed immigrant or permanent resident in Canada in the 2016 census (Statistics Canada, 2017). Overall, comparing our sample to data from Statistics Canada suggests that our sample was similar to the general population of Canadians over 50 regarding demographic characteristics that are related to attitude toward MAiD.
The MAiD provider survey was only administered to providers who were members of at least one of the two primary list-serves for discussion about MAiD assessment and provision across Canada. We do not know whether these providers are representative of all providers in Canada, but they are likely to be the ones who are most involved in MAiD care. Similarly, the providers on those list-serves who chose to participate in the survey may have differed from those who did not. We tried to mediate this limitation by sharing the findings with the wider CAMAP membership and asking for feedback.
CONCLUSIONS
Unlike other medical procedures, if a clinician does not follow the legal rules, they are deemed to have committed homicide. Clearly, it is important to have further discussion about the need for oversight. The policies about oversight of MAiD in Canada must consider the perceptions and preferences of both the general public and providers of MAiD. It is important that the public trust that protocols and safeguards will be followed. At the same time, if oversight requirements are too cumbersome, clinicians may choose not to provide MAiD care and/or may not be able to provide care for as many patients. Oversight policies must strike a balance between the needs of both stakeholder groups. There ought to be enough oversight to ensure safety and public trust, but not more than is beneficial in order to reduce provider burden and burnout. Future research should investigate the impact of true oversight by an independent body on the frequency of incidents and quality of MAiD care.
CONTRIBUTIONS TO KNOWLEDGE
This is the first study to investigate MAiD provider and public perceptions of the best practices of monitoring and oversight of MAiD in Canada. The findings suggest that most providers are satisfied with the level of oversight in their provinces even though oversight differs from province to province, ranging from reporting only (no oversight) to a review of each MAiD procedure by an interdisciplinary committee. The findings also highlight the divergence between the general public’s beliefs and MAiD providers’ beliefs about the best practices for oversight of MAiD.
This report gives policy makers the information required to have an informed discussion about MAiD oversight. The majority of the general public in our study want oversight, so provincial bodies should be discussing best practices for oversight of MAiD in Canada.
| TABLE 1. Summary of MAiD Oversight Models from Scoping Review
|
|
| Jurisdiction | Oversight Model |
| Quebec | · Report to Interdisciplinary commission· reviews each case for completeness of forms, interpretation of the law and compliance with regulations· available for consultations about difficult cases. |
| Ontario | · Report to Office of the Coroner· reviews forms, interpretation of law and regulations |
| BC | · Report to MAiD Coordinators (in some Health Authorities)· Report to BC Ministry of Health· Ministry of Health checks that reporting is done correctly and passed on to Health Canada |
| Alberta | · Report to Office of the Chief Medical Examiner: phone call, paper work· MAID care coordination service: paperwork, they submit to Health Canada |
| Saskatchewan | · Report to Sask Health Authority MAID Provincial program who report to Health Canada.· Forms are reviewed before being sent to pharmacy |
| Manitoba | · Report to Health Canada· Have a centralized service, so all records are within MAiD Coordinator’s office |
| Newfoundland, Nunavut,NWT, and PEI | · Report to Health Canada |
| Nova Scotia | · Report to MAiD coordinator and Health Canada |
| New Brunswick | · Report to MAiD coordinator and Health Canada· Drugs are not released until Risk Manager has reviewed documents |
| Yukon | · Report to Yukon Hospital Corporation· “will ensure a case review for all MAID provisions with a view to quality and system improvement” |
| United States | · reporting but no oversight in 9/10 jurisdictions· no reporting in Montana |
| Netherlands | · Report to police doctor immediately and then files are sent to inter-disciplinary Commission |
| Belgium | · Files to inter-disciplinary Commission |
| Switzerland | · Report to police who investigate |
| Australia | · Must get permission before each case |
| TABLE 2. Demographics of Respondents to Provider Survey
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||
| Characteristics | Number (%) ofparticipants
n=85 |
|
| Province | ||
| Alberta | 1 (1.2) | |
| British Columbia | 15 (17.6) | |
| Manitoba | 2 (2.4) | |
| New Brunswick | 2 (2.4) | |
| Nova Scotia | 1 (1.2) | |
| Ontario | 33 (38.8) | |
| Prince Edward Island | 1 (1.2) | |
| Quebec | 26 (30.6) | |
| Saskatchewan | 1 (1.2) | |
| Yukon | 1 (1.2) | |
| Language | ||
| English | 60 (70.6) | |
| French | 25 (29.4) | |
| TABLE 3. Provider Satisfaction of Current MAiD Oversight.
|
|||||
| Total N | Satisfied (row %) |
Unsatisfied (row %) |
Unsure (row %) |
p-value | |
| Multidisciplinary committee (Quebec) | 26 | 17 (65.4) | 3 (11.5) | 6 (23.1) | 0.155 |
| Coroner’s office (Ontario) | 33 | 22 (66.7) | 8 (24.4) | 3 (9.1) | |
| Provincial Oversight (BC and Manitoba) | 19 | 12 (70.6) | 5 (29.4) | 0 | |
| No oversight (other provinces and territories) | 9 | 4 (44.4) | 2 (22.2) | 3 (33.3) | |
| Total | 85 | 55 (64.7) | 18 (21.2) | 12 (14.1) | |
| TABLE 4. Provider Survey: Preferred type of MAiD Oversight.
|
|
| Preferred type of MAiD Oversight | Number (%) of respondents N=85a |
| Written reports after all MAiD deaths should be reviewed by a multidisciplinary committee (like in Quebec and the Netherlands) | 18 (21.2) |
| Written reports after all MAiD deaths should be reviewed by an internal group composed of colleagues (like in Manitoba) | 19 (22.4) |
| Written reports after all MAiD deaths should be reviewed only ensure that forms have been completed correctly | 37 (43.5) |
| Unsure | 17 (20.0) |
| a Respondents could select more than one of the three options; the percentages will sum more than 100. Those who responded “don’t know” and/or “no” to all three options were classified as “unsure.” No one responded “no” to all three options. | |
| TABLE 5. Demographics and attitudes of public survey participants (n=301).
|
||
| Mean age | 62.6 years (±9.1) | |
| Womena | 150 (50%) | |
| Mean years of education | 14.9 years (±2.8) | |
| Born in Canada | 231 (76.7%) | |
| Attends weekly religious services | 49 (16.3%) | |
| Do you think physician-assisted death should be available to patients with serious diseases, illnesses, or disabilities that cannot be cured and who cannot tolerate their suffering? | Yes | 238 (79.1%) |
| No | 32 (10.6%) | |
| I don’t know | 31 (10.3%) | |
| asample deliberately balanced | ||
| TABLE 6. Public survey: Preferred type of MAiD Oversight.
|
|
| Preferred type of MAiD Oversight | N=301 |
| No routine oversight is needed and the Colleges can deal with any complaints (like in Newfoundland) | 26 (8.6%) |
| Written reports after all MAiD deaths should be reviewed by a multidisciplinary committee (like in Quebec and the Netherlands) | 59 (19.6%) |
| Written reports after all MAiD deaths should be reviewed by the coroner (like in Ontario) | 56 (18.6%) |
| Written reports after all MAiD deaths should be reviewed by the provincial Ministry of Health (like in BC) | 36 (12.0%) |
| Written reports should be reviewed BEFORE drugs are released for MAiD (like in Australia) | 111 (36.9%) |
| Other (mostly statements that MAiD should never be allowed) | 13 (4.3%) |
[Appendices available: download PDF.]
REFERENCES
College of Physicians and Surgeons of British Columbia. (2021). Mission, Mandate and Values. https://www.cpsbc.ca/about-us/mission
DePoy, E., & Gitlin, L. N. (2015). Introduction to Research—Understanding and applying multiple strategies (5th ed.). Elsevier Mosby.
Downar, J., Fowler, R. A., Halko, R., Huyer, L. D., Hill, A. D., & Gibson, J. L. (2020). Early experience with medical assistance in dying in Ontario, Canada: A cohort study. Canadian Medical Association Journal, 192(8), E173. https://doi.org/10.1503/cmaj.200016
Government of Canada. (2016). An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying).
Government of Canada. (2018). Regulations for the Monitoring of Medical Assistance in Dying: SOR/2018-166. Canada Gazette Part II, 152(16). http://www.gazette.gc.ca/rp-pr/p2/2018/2018-08-08/html/sor-dors166-eng.html
Government of Canada. (2020, February 25). Medical Assistance in Dying. Health Canada Services. https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html
Hurst, S. A., & Mauron, A. (2003). Assisted suicide and euthanasia in Switzerland: Allowing a role for non-physicians. BMJ (Clinical Research Ed.), 326(7383), 271–273. https://doi.org/10.1136/bmj.326.7383.271
Medical Assistance in Dying Statute Law Amendment Act, 2017, no. 84 (2017). https://www.ola.org/en/legislative-business/bills/parliament-41/session-2/bill-84
Mroz, S., Dierickx, S., Deliens, L., Cohen, J., & Chambaere, K. (2010). Assisted dying around the world: A status quaestionis. Annals of Palliative Medicine, 10(3), 3540–3553. http://dx.doi.org/10.21037/apm-20-637
Public Health Division, Center for Health Statistics. (2018). Oregon Death with Dignity Act 2017 Data Summary. https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf
Quebec. (2017). Act Respecting End-of-life Care, RLRQ, chapter S-32.0001. Éditeur officiel du Québec.
Regional Euthanasian Review Committee. (2017). Annual Report 2017. https://derechoamorir.org/wp-content/uploads/2019/04/2018-Informe-anual-NL-2017-eng.pdf
Saunders, M., Lewis, P., & Thornhill, A. (2012). Abductive reasoning, or inference, is a useful tool for determining the course of scientific research. In Research Methods for Business Students (6th ed.). Pearson Education Limited.
Shaw, J., Wiebe, E. R., Nuhn, A., Holmes, S., Kelly, M., & Just, A. (2018). Providing Medical Assistance in Dying: Practice Perspectives. Canadian Family Physician, 64(9), e394–e399.
Statistics Canada. (2008). Canadians attend weekly religious services less than 20 years ago. https://www150.statcan.gc.ca/n1/pub/89-630-x/2008001/article/10650-eng.htm
Statistics Canada. (2017). Immigration and ethnocultural diversity: Key results from the 2016 Census. https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025b-eng.htm?indid=14428-1&indgeo=0
Statistics Canada. (2021). Educational attainment of the population aged 25 to 64, by age group and sex, Organisation for Economic Co-operation and Development (OECD), Canada, provinces and territories. https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=3710013001&pickMembers%5B0%5D=3.5&pickMembers%5B1%5D=4.1&cubeTimeFrame.startYear=2014&cubeTimeFrame.endYear=2018&referencePeriods=20140101%2C20180101
Steck, N, Junker, C., Maessen, M., Reisch, T., Zwahlen, M., & Egger, M. (2014). Suicide assisted by right-to-die associations: A population based cohort study. International Journal of Epidemiology, 614–622. https://doi.org/10.1093/ije/dyu010
Steck, Nicole, Junker, C., & Zwahlen, M. (2018). Increase in assisted suicide in Switzerland: Did the socioeconomic predictors change? Results from the Swiss National Cohort. BMJ Open, 8(4), e020992. https://doi.org/10.1136/bmjopen-2017-020992
White, B., & Willmott, L. (2018). Future of assisted dying reform in Australia. Australian Health Review, 42, 616–620. https://doi.org/10.1071/AH18199
