Applied Science, Faculty of
Health and Social Development, Faculty of (Okanagan)
Non UBC
Nursing, School of
Nursing, School of (Okanagan)
DSpace
BMC Health Services Research. 2021 Nov 04;21(1):1195
The Author(s)
Pesut, Barbara
Thorne, Sally E. (Sally Elizabeth), 1951-
Wright, David Kenneth
Schiller, Catharine
Huggins, Madison
Puurveen, Gloria
Chambaere, Kenneth
Background Even as healthcare providers and systems were settling into the processes required for Medical Assistance in Dying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whose natural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nurse practitioners with the implementation and ongoing development of this transition. Methods This qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews with nurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval and all participants provided written consent. Findings Participants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID. Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that was increasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID was becoming more accessible, and participants were learning to trust the process. However, the work was becoming increasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree of integration between MAID and palliative care services, there remained ongoing tensions around equitable access to both. Participants described an evolving gestalt of determining persons’ eligibility for MAID that required a high degree of clinical judgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to be resourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if persons worried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challenging due to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins of their suffering within a resource-strapped system. Conclusions Significant social and system calibration must occur to accommodate assisted death as an end-of-life option. The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigation of a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and those who provide such care require expert communication skills and knowledge of the healthcare system.
RESEARCH Open AccessNavigating medical assistance in dyingfrom Bill C-14 to Bill C-7: a qualitative studyBarbara Pesut1*, Sally Thorne2, David Kenneth Wright3, Catharine Schiller4, Madison Huggins5,Gloria Puurveen5 and Kenneth Chambaere6AbstractBackground: Even as healthcare providers and systems were settling into the processes required for Medical Assistance inDying (MAID) under Bill C-14, new legislation was introduced (Bill C-7) that extended assisted death to persons whosenatural death is not reasonably foreseeable. The purpose of this paper is to describe the experiences of nurses and nursepractitioners with the implementation and ongoing development of this transition.Methods: This qualitative longitudinal descriptive study gathered data through semi-structured telephone interviews withnurses from across Canada; cross sectional data from 2020 to 2021 is reported here. The study received ethical approval andall participants provided written consent.Findings: Participants included nurses (n = 34) and nurse practitioners (n = 16) with significant experience with MAID.Participants described how MAID had transitioned from a new, secretive, and anxiety-producing procedure to one that wasincreasingly visible and normalized, although this normalization did not necessarily mitigate the emotional impact. MAID wasbecoming more accessible, and participants were learning to trust the process. However, the work was becomingincreasingly complex, labour intensive, and often poorly remunerated. Although many participants described a degree ofintegration between MAID and palliative care services, there remained ongoing tensions around equitable access to both.Participants described an evolving gestalt of determining persons’ eligibility for MAID that required a high degree of clinicaljudgement. Deeming someone ineligible was intensely stressful for all involved and so participants had learned to beresourceful in avoiding this possibility. The required 10-day waiting period was difficult emotionally, particularly if personsworried about losing capacity to give final consent. The implementation of C-7 was perceived to be particularly challengingdue to the nature of the population that would seek MAID and the resultant complexity of trying to address the origins oftheir suffering within a resource-strapped system.Conclusions: Significant social and system calibration must occur to accommodate assisted death as an end-of-life option.The transition to offering MAID for those whose natural death is not reasonably foreseeable will require intensive navigationof a sometimes siloed and inaccessible system. High quality MAID care should be both relational and dialogical and thosewho provide such care require expert communication skills and knowledge of the healthcare system.Keywords: Medical assistance in dying, End of life, Nursing, Qualitative, Legislation, Healthcare systems© The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you giveappropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate ifchanges were made. The images or other third party material in this article are included in the article's Creative Commonslicence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commonslicence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtainpermission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to thedata made available in this article, unless otherwise stated in a credit line to the data.* Correspondence: barb.pesut@ubc.ca1School of Nursing, Principal Research Chair in Palliative and End-of-Life Care,University of British Columbia Okanagan, ARTS 3rd Floor, 1147 ResearchRoad, BC V1V 1V7 Kelowna, CanadaFull list of author information is available at the end of the articlePesut et al. BMC Health Services Research (2021) 21:1195 https://doi.org/10.1186/s12913-021-07222-5BackgroundMedical assistance in dying, referred to in Canada asMAID, has been evolving at a rapid rate. First intro-duced to the House of Commons as the subject of BillC-14 (An Act to Amend the Criminal Code and to MakeRelated Amendments to Other Acts [Medical Assistancein Dying], 2016), it received Royal Assent on June 17,2016 [1]. Even as Bill C-14 was being implemented,there was ongoing and robust debate about whether thelaw had gone far enough (see Table 1 for eligibility andsafeguards).Much of the early debate about MAID in Canada focusedon what it meant for natural death to be reasonably foresee-able and whether such a requirement was even constitutional[2–4]. Questions remained about whether MAID should beallowed for mature minors, whether advance requests forMAID should be allowed, and whether eligibility should beextended to those whose sole underlying medical conditionwas a mental disorder. Expert reports were commissionedon each of these topics at the same time that MAID was le-galized [5–7].MAID rapidly became an end-of-life option for manyCanadians. By the end of 2020, 21,589 Canadians hadchosen to receive MAID, with the number of casesgrowing by 34.2 % between 2019 and 2020 [8]. In 2020,MAID accounted for 2.5 % of all deaths in Canada; how-ever, this percentage was variable across geographic con-texts. The percentage of deaths attributed to MAIDvaried from 0.9 to 4.0 % in 2020 [8] with one geographicarea citing a rate as high as 4 % of all deaths by the endof 2018 [9].Even as healthcare providers and systems were settlinginto the processes and requirements of Bill C-14, fourseparate court challenges were initiated on the groundsthat Bill C-14 violated the Canadian Charter of Rightsand Freedoms [10]. Finally, in 2019, the Superior Courtof Quebec ruled that it violated the Canadian Charter ofRights and Freedoms[11] to restrict eligibility for MAIDonly to those persons whose natural deaths had beendeemed reasonably foreseeable [10]. The plaintiffs in thiscase, Truchon and Gladu, were living with disabilitiesthat made them eligible for MAID in every aspect exceptthat their natural deaths were not reasonably foreseeable.The Federal government chose not to appeal this deci-sion and instead began widespread consultation in theform of an online survey and expert roundtables in prep-aration for revisions to Bill C-14. The online survey re-sulted in an unprecedented 300,140 responses from theTable 1 Select eligibility requirements and safeguardsBill Eligibility SafeguardsBill C-14 (1) A serious and incurable, illness, disease or disability;(2) In an advanced state of irreversible decline;(3) Intolerable physical or psychological suffering that cannotbe relieved under conditions that the patient deemsacceptable; and(4) Where natural death had become reasonably foreseeable,without a prognosis having been made about length of timeremaining.(1) Requests had to be made in writing and signed by twoindependent witnesses;(2) 10-day waiting period that could only be waived if the ap-plicant was at risk of losing capacity;(3) Persons had to provide final consent immediately beforethe injection that would cause deathBill C-7Natural deathreasonablyforeseeable track.Final consent could be waived as long as(1) they met all of the eligibility criteria;(2) they entered into an agreement in writing that included aspecific day for the MAID procedure;(3) they were informed of the risk of losing capacity;(4) in the written agreement they consented to having MAIDon that day if they had lost capacity; and(5) at the time of administration they do not demonstraterefusal or resistance to have the substance administered.Request signed by one independent witness.No 10-day waiting periodBill C-7Natural death notreasonablyforeseeable track.Final consent can be waived if the person has self-administered and lost the capacity to consent but has notdied, if the following conditions are met.Before the person lost the capacity to consent to MAID, theperson entered into an agreement in writing with thephysician or NP providing MAID that• requires the physician or NP to be present at the time of theself-administration; and• allows the physician or NP to administer a second substanceto cause the person’s death if the person lost capacity toconsent and did not die within a specified period after self-administration.The person self-administered the first substance but did notdie within the specified period and has lost capacity to con-sent to MAID.The second substance is administered to the person inaccordance with the terms of the arrangement.Request signed by one independent witnessThere are at least 90 clear days between the day on which thefirst assessment begins and the day on which medicalassistance in dying is provided, or – if the assessments havebeen completed and both of the physicians or NPs are of theopinion that the loss of the person’s capacity to provideconsent to receive medical assistance in dying is imminent –any shorter period that the physician or NP who is to provideMAID considers appropriate in the circumstances.Pesut et al. BMC Health Services Research (2021) 21:1195 Page 2 of 16public, including 254,000 narrative comments. A contentanalysis of these comments indicated that, althoughthere was widespread support of MAID, a portion of theCanadian population remained concerned about MAIDand its evolution. Of the eight most common themesgenerated by the qualitative responses, two were aboutopposition to MAID or specific concerns about MAID[12]. Nevertheless, this broad-based consultation pro-vided important information for the legislative revisionto be known as Bill C-7.Bill C-7 received Royal Assent on March 17, 2021, fiveyears after the implementation of MAID through Bill C-14. The key change in Bill C-7 that is relevant to thispaper is that a two-track system was created, one forthose individuals whose natural death was reasonablyforeseeable and a separate track for those whose deathwas not. Table 1 outlines those eligibility criteria andsafeguards that were put into place for each track in thissystem that are relevant to this paper. Another import-ant change was the ability to waive the final consent re-quirement for those persons whose natural death wasreasonably foreseeable [10]. This change arose becauseof concerns that persons were choosing to undergoMAID earlier than they would have otherwise becauseof fears of losing the capacity to consent.Several concerns were noted in the legislative sum-mary of Bill C-7 [10]. First, there were concerns thatMAID assessors would have difficulty deciding whichtrack to assign persons to. Second, there was no time-frame outlining what constituted a reasonably foresee-able natural death. Third, there were moral concernsraised about providing MAID to those whose naturaldeath is not reasonably foreseeable; some speculated thatthe resulting ethical, emotional, and psychological bur-den might result in fewer physicians and nurse practi-tioners being willing to assess for and provide MAID.Fourth, there were concerns that no time limit had beenplaced on the waiver of final consent. Theoretically, onecould set a MAID date far into the future and then usethis waiver as a form of advance consent.This rapid development of MAID has generated sig-nificant debate in the palliative care community. In thecontext of MAID, key palliative care stakeholders havestrongly advocated for universal access to high qualitypalliative care [13]. A frequently cited statistic is that lessthan 30 % of Canadians have access to high quality pal-liative care [14], although a recent report from the Can-adian Institutes for Health Information suggested that itis difficult to obtain good information on palliative careaccessibility, in part because of its variability across thecountry [15]. However, the second annual report onMAID in Canada indicated that 88.5 % of MAID recipi-ents in 2020 had access to palliative care if needed [8].Some have been concerned that the cost savingsgenerated by MAID may influence the development ofMAID programs over palliative care programs. A costanalysis of MAID in Canada suggested that annualhealthcare spending could be reduced between 34.7 Mand 138.8 M as a result of MAID, which far exceeds theanticipated costs of 1.5 to 14.8 M to run MAID pro-grams [16]. To respond to these concerns, the Federalgovernment committed to improving palliative care inCanada and developed a framework to guide that im-provement [17]. A recent blog from the Canadian Parlia-mentary Budget Office indicated that, conservativelyestimated, the Federal government invested 184 M be-tween 2016 and 2020 [18], an amount that exceeds thecost savings generated by MAID, specifically toward pal-liative care services.A review of empirical evidence from the Canadiancontext post-MAID implementation provides insightinto significant factors influencing early experiences.From a systems perspective, many were struggling to setup processes that ensured patient-centered care and ac-cessibility [19], particularly in light of the limited num-bers of assessors and providers available [20], and theheavy workloads on those who were willing and able toprovide MAID services [21]. Accessibility to MAID wasinfluenced by the sometime contentious relationship be-tween those care providers involved in MAID and thosein palliative care [19, 22, 23]. There was a need to sup-port healthcare providers involved in MAID in light ofthe emotional impact [20, 24, 25] and a need to providehealthcare providers with the knowledge and skills to as-sist with, or to assess and provide, MAID, particularly inlight of vague eligibility criteria [20, 26, 27]. There wasalso a need to manage the relational challenges thatarose between those who saw MAID as an acceptablemoral option and those who did not [19–21, 25, 26].Caring for families throughout the process and into be-reavement has consistently been one of the most chal-lenging aspects of MAID [20, 28, 29]. Given thepotential impact of these factors on the quality of careprovided through MAID, and on the ongoing debateabout the relationship between MAID and palliativecare, it is important to understand how MAID is evolv-ing over time within a larger systems perspective.Nurses are an important access point for understand-ing those factors that influence MAID implementationbecause (1) they lead the coordination services that arethe primary point of access for patients; (2) nurse practi-tioners were given the legal authority under Bill C-14 toindependently act as both assessors and providers ofMAID in Canada; and (3) nurses are the healthcare pro-viders who spend the most time with patients and fam-ilies as they progress through the many phases of MAIDcontemplation, assessment, and provision. Thus, nurseshave a vantage point on system issues that few othersPesut et al. BMC Health Services Research (2021) 21:1195 Page 3 of 16have access to. Therefore, the purpose of this paper is todescribe the experiences of nurses and nurse practi-tioners with the implementation and ongoing develop-ment of MAID from Bill C-14 to Bill C-7.MethodsDesignThe design is a longitudinal qualitative study. Data col-lection is occurring at three time points: 2018/2019,2020/2021, 2022/2023. This paper reports on a subset ofcross-sectional data collected during between September2020 and June 2021, a time when Bill C-7 was under re-view and then achieved early implementation. This studyunderwent ethical review by the behavioural researchethics board at the University of British ColumbiaOkanagan.ContextIn Canada, MAID is often coordinated through central-ized services that cover a geographic area. Clients cancontact these services directly without a healthcare refer-ral. The initial point of contact is a MAID coordinatorwho answers the initial inquiries, does an intake, and de-termines whether the client meet criteria for MAIDassessment. The coordinator is responsible to findhealthcare providers to conduct assessments andprovision; these healthcare providers may not have aprior relationship with the patient. Some of these health-care providers travel long distances to perform MAIDprovisions; although in the context of COVID-19, assess-ments can be conducted virtually.SamplePrevious participants who had initially been interviewed in2018/19 were contacted by email. New participants were re-cruited using purposive and snowball sampling. Recruitmentbulletins were distributed through national nursing agenciesand through the Canadian Association of MAID Assessorsand Providers. Strategies included email, Facebook, Twitterand word of mouth. We recruited from every English-speaking province; however, we did not recruit from thethree territories in Canada as there were few reported casesof MAID during this time.Data collectionData collection occurred through semi-structured tele-phone interviews. Telephone interviews were necessaryto access a pan-Canadian sample. Interview questionsprobed around general experiences with MAID since theimplementation of Bill C-14; perceptions of the develop-ing relationships (or lack thereof) between MAID andpalliative care systems; and the practical implementationof the eligibility criteria and safeguards, including thosedeveloping under Bill C-7. Interviews were audio-recorded, transcribed verbatim, checked for accuracy,and downloaded in NVIVO (QSR) for analysis.Data analysisCoding was conducted inductively using the processconsistent with Interpretive Description [30]. Two inves-tigators began by co-constructing open codes whichwere then refined using analytic insights from three add-itional investigators. Constant comparative analysis wasused to compare and contrast data to identify patternsand commonalities [31]; codes were further refinedthrough this process. Thematic patterns were then de-veloped and a narrative account was constructed. Thisnarrative account was further developed and refinedwith input from all team members.ResultsThe sample consisted of 50 nurses and nurse practi-tioners, 26 of whom had been interviewed previously in2108/2019 and 24 of whom were new participants inter-viewed in 2020/2021 (See Table 2).Themes developed from these interviews interpret thetransitions and challenges associated with implementingBill C-14; evolving tensions and synergies betweenMAID and palliative care; experiences of determiningeligibility under Bill C-14; and challenges under the newBill C-7.Implementing Bill C-14: transitions and challengesParticipants described how, in just a few short years, MAIDhad transitioned from a new, secretive, and anxiety-producing procedure to one that had become increasinglyvisible and normalized. With this normalization, they notedan increased openness about the procedure and an increasedtrust on the part of nurses that MAID assessors and pro-viders were fulfilling their requirements under the law. Thesetransitions paralleled an increased number of cases, an in-crease in the complexity of cases, and a subsequent effect onworkload and funding.Normalized to a pointParticipants described what it was like to integrateMAID into their practice in the early days of Bill C-14.“In the beginning, because everything was so new and big,like, MAID is really big and it’s still really big but it’s notas big.” (P6) The perception of MAID as a major prac-tice change was related to the novelty of the procedurerelative to conventional end-of-life care, the political andethical debate that had characterized legalization, andmore importantly, the harsh reality that the procedureresulted in the rapid death of the patient. However, al-though participants spoke of the procedure itself becom-ing normalized, they often observed that the emotionalimpact never became normalized, and that this was aPesut et al. BMC Health Services Research (2021) 21:1195 Page 4 of 16good sign. One nurse who had participated in numerousprovisions since legalization said, “I expect people to saythat I am getting hardened to the whole thing, where it isjust part of what you do in a day. But I say to them, ‘I’mnever going to be hard to this and if I am, I can’t do itanymore.’” (P40)Participants described work contexts that were in-creasingly characterized by acceptance and relaxation ofthe tensions associated with MAID, while acknowledgingthat the impact of it on patients and families still createdan emotionally-laden environment. “I’m more familiar,the doctors seem more familiar and more relaxed. It’sjust calmer on the unit. The families and the patient arestill… I mean, it’s still just a big thing if you ever go nearthe room or into the room or contemplate saying goodbye,those things are all still big.” (P6) Normalizing the pro-cedure of MAID therefore changed, but did not neces-sarily mitigate, the emotional impact.From secrecy to visibilityPart of the normalization was a greater openness to talk-ing about MAID. Participants described the secrecy thathad characterized the early days of MAID implementa-tion. Healthcare team members would not necessarilyhave known which of their patients were getting MAIDuntil after it had occurred. Team members had been re-luctant to talk to one another about MAID, because itwas so morally divisive.Two years ago, I didn’t tell people that I did MedicalAssistance in Dying because I did not want to defendmy position. And I didn’t want somebody to defendtheirs. Now I certainly don’t advertise it, but if itcomes up in a conversation and I think that the per-son who is speaking would be open to knowing that Ido that, then I will say I am part of the movement.(P14)The idea of being part of a “movement” was not anuncommon one as participants saw part of theirmandate as making MAID acceptable to more patientsand healthcare providers.Workplace policies and practices had also changed,making MAID more visible. “It’s on the calendar nowthat so-and-so’s being assessed for MAID and on ourboard in hospice, we’ve got all kinds of little tick marksfor procedures, and MAID is one of them.” (P68) Partici-pants suggested that this openness was supported byfirst-hand accounts in the media about what it was liketo live with suffering and the relief that the option ofMAID provided. “I find that a lot of the change in peo-ples' perspective has been not from arguments or the factsor the criteria or the law, it’s been the narratives. It’sbeen peoples' stories and peoples' experiences.” (P81)Table 2 Participant characteristics (N = 50)N %EthnicityCaucasian 45 90Other 5 10Religious/SpiritualReligious and Spiritual 24 48Spiritual not Religious 17 34Not Religious or Spiritual 9 18Religious not Spiritual 0 0Primary populationaSpecialized Palliative 26 52Primary 17 34Med Surg 13 26Other 11 22Location of workaCommunity 24 48Hospital 18 36Homecare 19 38Hospice 12 24Long-Term Care 10 20Other 4 8Province worked inBritish Columbia 23 46Ontario 21 42Other 6 12Sphere of work responsibilitiesaUrban (>10,000) 41 82Rural (<10,000) 28 56Remote 8 16Nurse DesignationRegistered Nurse 30 60NP 16 32Clinical Nurse Specialist 2 4LPN 1 2RPN 1 2Mean Years in Professional Designation (mean ± SD) 17.9 (± 11.8)Number of MAIDs Since Legalization0-4 8 165-9 7 1410-14 6 1215-19 7 1420-24 4 825 or more 18 36Contentious objector to MAIDYes 5 10No 45 90aResponses are not mutually exclusive, multiple ‘yes’ responses possiblePesut et al. BMC Health Services Research (2021) 21:1195 Page 5 of 16Greater accessibilityThis increasing comfort and openness coincided withgreater MAID accessibility. Initially, it could be difficultfor MAID coordinators to find physicians or nurse prac-titioners who were willing to perform the assessmentsand provisions. “In the initial stages of MAID there werecertainly a number of physicians that did not want to beinvolved.” (P15) However, at the time of these interviews,more providers were becoming involved. “I have seenmore providers in the community which is really good.There’s been times in the past where there were no pro-viders, some hospitalists are coming from hospital to pro-vide that service.” (P11) As this participant indicated, theuse of hospitalists for MAID assessments and provisionswas one way to fill the gap of an insufficient number ofproviders willing to do provisions in community.Trusting the processThis increase in accessibility was accompanied by anincreased trust by nurses in assessors and providers.This trust was important, because nurses’ contribu-tions to patient care throughout the decision and im-plementation processes were essential. As self-regulating professionals, they too were required to en-sure that eligibility and safeguards had been addressedprior to their participation. “As a registered nurse, it’sjust always been my philosophy to do my due dili-gence. I never just go in and participate in a MAIDbecause someone told me to.” (P73) However, it wasnot always easy for nurses to get access to the docu-mentation that allowed them to check eligibility andsafeguard information. As a result, trust in those theywere working with was essential. A nurse describedthe development of that trust.In the beginning I had the perspective of I’m going togo in there and I’m going to protect that patient andI’m going to make sure that they’re getting thisMAID because they want it and because it’s legaland because it’s right. Whereas, by the end of it, Iwas, like, nope. I knew more, and I trusted the pro-viders because I knew the providers. (P63)Increased cases, complexity, and workloadThe increased volume in MAID cases, along with aconcurrent need to develop systems and processes,meant that in some regions workload quickly becameunmanageable. In one geographic region, the percent-age of MAID deaths had increased from 2 to 4 % ofall deaths within a one-year period. This meant work-ing overtime to keep up with the demand. In othergeographic areas, waitlists for assessment were devel-oping and providers were having to group severalprovisions in a single day to keep up, a situation thatwas not considered best-practice, either for patientsor providers. “So, our patients were told, ‘Yes, you areeligible. If you want to have MAID, you will be sched-uled in on Wednesday, July the whatever at 10o’clock.’ The provider went from one person’s home toanother and did four provisions in one day.” (P63)Nurses who were involved in MAID leadership po-sitions (e.g., MAID coordinators) were required toperform multiple roles such as providing public andhealthcare provider education; screening and coordin-ating of requests; developing policies and standards;and participating on committees at multiple decision-making levels. However, one of the most challengingand labour-intensive parts of their role was case man-agement. Coordinators received initial inquiries fromthe public and were responsible to determine whetherthose cases should be referred to an assessor. Partici-pants explained how after the media stories of theCourt decision in which the eligibility criterion of rea-sonably foreseeable natural death was struck down,persons whose natural deaths were not reasonablyforeseeable started contacting MAID coordination ser-vices about their eligibility. As these potential MAIDcandidates told the coordinators their stories of illnessand suffering, it would often become apparent thatthey had not accessed important services that couldalleviate that suffering. These coordinators were thenethically obligated to navigate them toward those ser-vices. “I’m actually working with a case manager andit’s much beyond what would be the expectation of aMAID assessor normally; however, it is my obligationto make sure that the patient has been made awareof all of their care options.” (P30)MAID coordinators who were required to perform thisnavigation without the support of case managers en-countered numerous barriers such as an inability to getsufficient patient information, a lack of services to whichthey could refer clients, a delay in the availability ofthose services, and reluctance on the part of some physi-cians to work with them because of their affiliation withMAID care. For example, a participant described tryingto get information from a physician about a MAID ap-plicant. “There could be all kinds of levels of why hedidn’t want to talk to me but clearly, he didn’t want totalk to me and he wasn’t going to share any information.”(P30) All of this resulted in increased workloads forthese coordinators.Remuneration challengesThis type of intensive case management work consumedmany hours, and participants suggested that the moneyavailable for MAID services was not keeping pace withdemand. Remuneration could be problematic at both thesystem and individual level. At the time of this dataPesut et al. BMC Health Services Research (2021) 21:1195 Page 6 of 16collection, nurse practitioners in parts of the countrywere having difficulty being remunerated for their MAIDwork unless it was part of their regular job. As a result,some volunteered their time to do this work.At a system level, participants cited the complex opticsof giving more money to MAID. At the time that MAIDwas implemented in Canada, substantial new healthcarefunding was being targeted toward improving palliativecare in Canada, and this money could not be re-routedto support MAID.In the last year, palliative care was granted millionsof dollars in our area, but, I need help, our little pro-gram (MAID) needs help, needs some more people.And we’re continually told ‘no, the money has beenearmarked for Palliative Care and it cannot go forMAID, it cannot, cannot, cannot’ and I find that dis-turbing because the people that we are seeing withassisted dying are… not all of them but the high ma-jority are the same people who would be eligible forPalliative Care. (P75)Thus, despite the increasing workload associated withMAID, providing more money for MAID programscould be interpreted as taking money away from pallia-tive care even though public monies for healthcare inCanada are not constrained in this way. This interpret-ation would be problematic because the infusion ofmoney into palliative care was meant to assure the pub-lic that persons would not choose MAID because of lackof palliative care services.MAID and palliative care: tensions and synergiesThe funding optics described above were indicative of anumber of concerns shared by study participants aboutthe emerging relationships between MAID and palliativecare. Many reflected on the impact on patient choiceoccasioned by inequities between the programs. Partici-pants further spoke of the benefits and challenges of in-tegrating MAID within palliative care systems of care.Patient choice and inequities in accessThe legalisation of MAID through Bill C-14 had an un-anticipated positive impact upon palliative care, primar-ily in raising the profile of palliative care and callingattention to advance care planning as a priority direc-tion. The public attention to MAID, and the tensions be-tween MAID and palliative care that often played out inthe public domain, served to raise peoples' awarenessabout end of life and palliative care overall.By virtue of the tension between the palliative carecommunity and MAID, and there is that tension,what that did was shone a light on palliative care. Itreally raised the bar and raised awareness aroundwhat is palliative care, and raised a lot of questions.Why would somebody choose an assisted death ver-sus palliative care options and services and whatthat might look like? (P80)Bringing these options to public attention proved fertileground, and a sense of urgency around advance care plan-ning ensued. And over time, as the participant’s accountssuggested, the tensions between MAID and palliative carewere finally settling into a sense that informed patientchoice was the unifying factor between the two.There was a politicization between palliative careand MAID and the cry for funding and I don’t hearthat so much now anymore and I think it’s all quitevalid to say that we want people to really make surethat they know what their palliative options are butthen, the choice belongs to them. (P64)However, the availability and accessibility (or lack thereof)of MAID and palliative care services created ethical con-cerns about patient options and choice at end of life. Partic-ipants described how hard they tried to ensure that patientswere aware of their various end-of-life options and that theywere informed of these choices in an unbiased way. As oneexplained, “I review all the available care options at end-of-life without bias and don’t talk about palliative care for 35minutes and talk about MAID for five. Like, you have to giveequal airtime to all of the options so that the patient doesn’thave an unconscious bias towards one.” (P4) This partici-pant was recognizing the importance of not emphasizingone option over another so as not to unduly influence clientdecision-making. Another participant suggested, “If we’recoming in a principled and an ethical way, there should beno coercion, it should be a neutral giving of information forpeople to weigh up and make their own decisions and pref-erences.” (P64)But participants questioned whether it was possible tofulfill this obligation of choice when the options werebounded by what was available and accessible, given thefunding limitations that characterized both MAID andpalliative programs. Despite the recent infusion of fundingfor palliative care, there remained gaps across the countryincluding healthcare provider knowledge of palliative care,services available in rural and remote communities, and areluctance of primary care providers to introduce the ideaof palliative care. Others described inequities betweenMAID and palliative care funding that influenced whichservices were more accessible to patients.MAID prescribers were being funded to travel to pro-vide an assisted death, whereas our palliative carephysicians, who have been doing home-basedPesut et al. BMC Health Services Research (2021) 21:1195 Page 7 of 16palliative care travelling to rural and remote areas,their time and travel were not compensated. Therewas just this real frustration. You are making MAIDfar more accessible than good palliative care. (P80)A prevailing idea that MAID must be accessible be-cause it is legal and funded under the Canada HealthAct was particularly challenging for some to accept ifthe same premises were not equally applied to palliativecare. Accessibility to MAID, as evident in increasingnumbers of cases, was sometimes seen as a positive pro-gram outcome. “I remember this senior leader saying tome, ‘we’re really proud of our success rate with MAID.’And I said, ‘Well, what do you mean by that?’ ‘Well,we’re really proud of our particular area and that who-ever wants MAID, gets it, and we have one of the highestrates of MAID compliance.’” (P82) In contrast, this par-ticipant suggested that disproportionately high MAIDrates should trigger a deeper exploration of the reasons,including the possibility that the region was offering in-sufficient access to palliative care.Benefits and challenges of program integrationThe degree of integration between MAID and palliativecare varied across Canadian contexts: from no integra-tion, to an informal consulting relationship, to full clin-ical program integration, although it is important tonote that even programs that reported high degrees ofintegration might still have separate organization report-ing and financial structures. This meant that, eventhough the spirit of integration was followed, themandatory separation enshrined in the legislation be-tween MAID and palliative care remained.Participants who had been involved in system-level inte-gration between palliative care and MAID described thebenefits and process of that integration. “We really tried topush and shift the dialogue from it’s either palliative careor MAID to one that says it’s palliative care all the waythrough your experience. How you died doesn’t really mat-ter.” (P80) Despite the moral or philosophical objectionsthat palliative clinicians might have toward MAID, therewas acknowledgement that both were caring for the samepopulation. Further, it was acknowledged that palliativecare clinicians had unique and necessary expertise to con-tribute to the MAID process.For right now, our population is the same. And so, itmakes sense that MAID is part of the palliative andend-of-life program, that we have more integrationand collaboration with our MAID prescribers andour palliative care teams because our palliative careclinicians and teams are the best people to be havingthose difficult conversations with individuals aroundsuffering. (P80)Another benefit of integration was the ability to buildpolicy across programs that would benefit patients. Forexample, one participant described how the MAID andpalliative teams working together developed policies thatwould ensure compassionate care across the spectrum.An example of this was a “kindness” policy in which anyperson desiring MAID who needed to be transferred outof a palliative facility for the procedure would not beasked to bear the cost of that transfer.1(P75)This type of cooperation between the MAID and pal-liative programs was best achieved through relationalprocesses. For example, this participant involved in inte-grating MAID with palliative care speaks of the slow andpatient process of building relationship.I would say from day one, this relationship of beingembedded in palliative care has been such a push,it’s a building of relationships. We need to be here,we want to be here, but just a gentle continualknock, knock, we’re here, awareness. Right? Verykind, very respectful of building relationships, build-ing engagement, doing education, so we have workedsuper, super hard for that success. (P75)However, this relationship building required funds tobring self-employed physicians together for this educa-tion and relationship-building, funds that were not al-ways available on an ongoing basis.Despite the benefits of program integration, some par-ticipants remained highly cautious about the idea of fullyintegrating the MAID and palliative programs, and ar-gued that it was important to keep the programs separ-ate, while learning to share expertise.Well, I don’t know about full integration, to be hon-est. I think there’s still a discomfort there but I thinkthere needs to be very strong links. I think it behoovespalliative clinicians to understand MAID, its currentdirections and trends and issues, and understandhow the MAID system works. But on the other hand,I think it’s really important that MAID providershave a strong working knowledge of palliative careand don’t come in with blinders thinking, you know,this is what I do and this is all I do and not needingto know more. I think we both serve the individualbetter if we have a full working knowledge of eachother’s worlds. (P64)1 In Canada faith-based facilities are allowed conscientiously objectingstatus based upon previously existing agreements between the faith-based system and the public system. This has created a number of bar-riers for patients and so anything that helps to overcome those barriersis perceived as a kindness.Pesut et al. BMC Health Services Research (2021) 21:1195 Page 8 of 16Participants spoke to the important expertise that pal-liative practitioners have around relieving suffering andhaving difficult conversations, skillsets they felt were es-sential to determining eligibility for MAID and ensuringthat persons have the best quality of life for as long asreasonably possible.Our palliative care clinicians and teams are the bestpeople to be having those difficult conversations withindividuals around suffering. And they are the onesthat can work with that whole person’s sense of suf-fering, not just the physical. I think the concern hasalways been, and certainly we have seen this, is thatwithout palliative care, without individuals beingtouched by palliative care and having palliative careas part of their experience around, you know… whatare their goals and wishes and how do they want todie? If they just go to ‘I’m suffering and I want it toend, give me an assisted death’, they lose out on awhole lot of opportunities by not having palliativecare involved. (P80)The final drawback was that of workload. Nurse prac-titioners who were the most responsible practitioners fora group of palliative clients spoke of how the highlylabour-intensive work of MAID could quickly over-whelm their practice, taking time away from their pallia-tive clients. As a result, some had agreed only to beinvolved with MAID if it involved their own clients.Eligibility and safeguards under Bill C-14The legal language of Bill C-14 required interpretationfor clinical practice. Participants described how their un-derstandings of the eligibility criteria had evolved, howstressful it was to determine that someone was ineligible,and how particularly resourceful persons were able toachieve their goal of having MAID even if they had beendeemed ineligible. The most challenging safeguards tonegotiate were the ten-day waiting period and the re-quirement of final consent.Evolving gestalt of eligibilityWhen questioned about their experiences with MAIDeligibility and safeguards, participants described anevolving understanding. “I’ve noticed that the eligibilityhas loosened up or lightened up a little bit. I will say thatin the past four years, I have probably seen more peoplequalify.” (P40) This evolving understanding was neces-sary because, although the criteria and safeguards wereclear in the legislation, the legal language was ambiguousand required clinical interpretation.‘Reasonably foreseeable’ is something that lawyerssay all the time. Lawyers are very comfortable withthat, they love the ambiguity of it, the flexibility of it,because it means you can argue about it, aboutwhat that means, and it creates a certain flexibilityto the law but of course, as a provider or as a clin-ician, you don’t want flexibility, you don’t want am-biguity, you want certainty. (P81)Doing assessments on persons who did not clearlymeet the eligibility criteria, or whose eligibility was “verygrey” (P67), required considerable clinical judgement, aprocess that one nurse described as a “gestalt of the ex-perience of the person.” (P76) This gestalt was easier ifthe assessor knew the patient.When I’m assessing my own patient, I have a histor-ical context, I know the dynamics, I know the diag-noses, I know that they’ve been offered appropriatepalliative care, for example, I know where they arein their kind of cancer journey and so the assess-ments are much easier to do in terms of eligibilitybecause I just have the historical background for thepatient. (P94)Assessors learned from one another as they developedthis understanding of the criteria. “We have to be able toreflect on cases, have discourse, learn, just like with anyother complex situation.” (P76) This process entailed rec-ognizing that there could be differences in clinical judge-ment about who should be eligible and that patientsmight demonstrate varying levels of determination tohave MAID for different clinicians. These complex pro-cesses prompted much self-reflection. For example, thisassessor was involved in a situation where there wasconflicting information about what the patient wanted.“It was quite obvious to me he wanted the MAID. Andso, there I was pretty conflicted because I thought, ‘Am Itrying to force this MAID because I know how it goes andit’s just a quick easy clinical thing? Am I missing some-thing’”? (P63)The possibility that two providers might come to a dif-ferent conclusion about whether a patient was eligiblefor MAID raised issues of equity.From an ethics perspective, you want consistency, youwant similar cases to be treated similarly. So, if you getsimilar cases, so the same patient, same background,same circumstances with two different providers and oneof the providers said, “Yes, you qualify”, and the otherprovider said, “No, you didn’t”, that is an issue of fair-ness, that is an issue of consistency, and that is not some-thing we want in a program like MAID. (P81)Further, participants indicated there was still a lack ofknowledge among healthcare providers and the publicPesut et al. BMC Health Services Research (2021) 21:1195 Page 9 of 16about the eligibility criteria and safeguards or about theprocess. Participants explained that physicians who werenot acting as assessors and providers might be unawarethat they did not have authority to deem someone ineli-gible. “There’s this massive running gap between physi-cians about what their role is, how this actually works,what the eligibility criteria are, and we’re still seeing thatfour years later.” (P86)The striking down of the reasonably foreseeable naturaldeath criterion in the Courts was felt to be a significantturning point in MAID eligibility assessments. Assessorswere no longer required to define what constituted a rea-sonably foreseeable natural death, and this opened thedoor to more persons being eligible for MAID.The comfort level that our providers had in terms ofassessing people, it shifted remarkably, it gave in-creased confidence. And so, after that ruling, we sawmore people beyond a cancer diagnosis, so we sawmore people with MS, we saw more people with Par-kinsons, more with advanced osteoarthritis and wesaw diagnoses of frailty. (P75)The fact that it was no longer about prognosis butabout an illness trajectory made assessments easier. “It’smore are you on a path of morbidity and illness thatthere’s going to be a complication that’s going to end yourlife at some point? So, I found that when that criterionwas changed or removed, that actually made it a lot eas-ier for me.” (P84)Stress of telling someone they are ineligibleA powerful incentive for getting these eligibility assess-ments right was the stress associated with deeming aperson ineligible for MAID. Assessors spoke of a senseof relief they felt when getting a referral that was rela-tively straightforward. The more complicated cases wereemotionally intense. Assessors were aware that patientsdid not enter into these eligibility assessments lightlyand that they often experienced a sense of relief oncethey were deemed eligible. Participants told stories ofbeing involved with complex cases and having to navi-gate the “pushback” (P94) that would come from the dif-ferent people involved in the assessment. Theseassessment situations were described as even more emo-tionally taxing than the provision of MAID. In some sit-uations, assessors had to withdraw from the assessmentprocess to preserve their own mental health. “We reallytry to work through it. Right? But it’s a lot of work and sowhen that’s starting to disrupt my sleep and affect myability to interact with my kids in a motherly way, some-times I have to just push things back.” (P94)Assessors expressed feelings of guilt and sadness overhaving to deem someone ineligible. Statements thatineligible persons made, or actions they took in responseto the assessment, were imprinted on the assessor’smemory. One participant reflected on the response of anelderly client “Who has the right to determine whatamount of suffering I’m in in my own life? I’m 80, I’ve lostmy sight, I’m in constant pain, I don’t feel like eating andI’m not eligible?“ This client went on to experience med-ical complications that resulted in a trajectory of suffer-ing. Such statements by patients were particularlydifficult for assessors when the primary reason forMAID was resolving suffering.Finding a way to make someone eligibleWhen applicants did not meet eligibility criteria, therewere still options for those who were determined and re-sourceful. “So, it’s almost like you can find an assessorthat will qualify you if you are a very resourceful, smartperson.” (P67) In some situations, persons would seek athird assessment and through it ultimately be successfulin being deemed eligible. MAID coordinators might as-sist this process by screening potential assessors to en-sure that they were well-versed in the criteria. “We’rekind of protective of the patients and we try not to exposethem to people that are going to say no. And so, we vetthe physician or nurse practitioner beforehand. And justbe, like, ‘Do you think that you’re going to find this pa-tient eligible? Like, what are… what’s your understandingof the eligibility criteria’”? (P86) In other cases, where itbecame apparent to the clinician that persons were de-termined to have MAID, the clinician might counselthem about the medical treatments they could refusethat would put them in a position of being eligible. Forexample, this nurse described the situation of a personwho was living with a chronic condition that requiredongoing intensive treatment that they were no longerwilling to bear. Although she was unable find him eli-gible for MAID, she was able to outline a path by whichhe could become eligible should he choose to do so. “Ifyou decide, ‘I’m not going to, you know, take antibioticsfor my urinary tract infections. I’m not going to do X, Y,or Z preventative care.’ I would then find him eligible.”(P94)Waiting periods and final consentThe safeguard that participants found most challengingwas the ten-day waiting period and the need for patientsto provide final consent prior to the injection of themedication. The biggest concern was that patients weretaking MAID too early because they feared losing cap-acity. “If you’ve got a certain disease or illness that couldpotentially incapacitate them, it’s distressing for them be-cause then their choices get narrower and they may endup having to do MAID sooner than what they wouldwant.” (P48) Participants also described family who werePesut et al. BMC Health Services Research (2021) 21:1195 Page 10 of 16concerned about providing pain medication because itmight lead to the loss of the person’s ability to give con-sent. "When a client is taking quite a bit of pain medica-tion and they’re starting to be more and more drowsy I’veheard questions from the family like, ‘Should I withholdmedication? Because he’s comfortable but he’s not reallyresponding.’ And so, they’re worried about that last-minute withdrawal of consent." (P71)Families could be deeply impacted if their familymember had sought MAID but could not have it be-cause they lost the capacity to give consent at the end.“Half an hour before her MAID was to happen, shestroked. She was unresponsive and the family went crazy.They were, like, ‘Mom, mom, God, wake up. Mom, youhave to be able to say it.’” (P40) The consequences ofthis part of the legislation were perceived to be so detri-mental to patients and families that some providers sim-ply did what they felt to be the ethical thing to do.Participants witnessed instances of the waiting periodbeing waived on a regular basis or of the final injectionbeing provided even when the ability to give final con-sent had become questionable. However, it is importantto note that in most instances these were seen to be eth-ical acts that were necessary in the case of inflexiblesafeguards that did not protect patients’ best interests.Anticipating Bill C-7At the time that this data was collected, the intentionssurrounding the new legislation Bill C-7 were publiclyavailable but was still being debated in government. Wedid, however, ask participants about their perceptions ofthe impending new legislation. Overall, those who wereacting as assessors and providers were more aware ofthe content of the changes and the subsequent implica-tions than were those who primarily support patientcare. Many of the latter had little to no knowledge of thechanges.Participants indicated that the timing of the changeswas difficult when the systems and processes were justnow settling into an equilibrium after the implementa-tion of Bill C-14. Several assessors and providers wereuncertain about whether they would continue to partici-pate under the new legislation. Two primary concernscharacterized this reluctance: the complexities thatwould characterize the assessment and provision ofMAID and the lack of resources available to meet theneeds of the newly eligible population whose naturaldeath was not reasonably foreseeable.New populations bring new complexitiesEven though the criterion of foreseeable death had beenstruck down by the courts, and therefore realistically cli-ents did not need to be at end-of-life under Bill C-14,participants felt that Bill C-7 would lead to whole newpopulations requesting MAID. Specific populations citedincluded those with mental health or psychiatric condi-tions, those living with chronic pain, and those who wereliving with disabilities. This was seen to be a momentouschange by some. At the point of which folks with mentalhealth issues can have an assisted death, then that kindof changes everything for me. (P80) Although Bill C-7contained an embargo on assisted death for those whoseunderlying medical condition was psychiatric, partici-pants knew that this embargo was time limited.Participants further suggested that it might be difficultto assign persons to one of the two tracks availableunder Bill C-7 in light of their challenges with determin-ing what constituted a reasonably foreseeable nat-ural death under Bill C-14.I’m personally not super excited about having turnedinto a two-stream process (C-7). Logistically, it willbe a problem because I think our hope was in re-moving the reasonably foreseeable death criterionwould mean we don’t have to figure out what doesreasonably foreseeable mean, but now we do. And Ithink that is even more challenging. (P83)Whereas the striking down of the reasonably foresee-able criterion by the Court had the effect of creating amore relaxed assessment climate, assessors were nowgoing to be required to grapple with that criterion in anew manner that had significant implications for MAIDapplicants, as those without an imminently foreseeabledeath were required to apply under more stringentsafeguards.The complexity of cases that were anticipated underBill C-7 had been foreshadowed under Bill C-14. Thesecomplexities included applicants with psychiatric condi-tions, who were disenfranchised from the healthcare sys-tem, or who were experiencing extreme pain for whichno underlying cause could be found. Addressing thesecomplex cases was going to require “really having to digdeeply into their medical records and specialist reports todetermine, you know, does their entire picture of medicalconcerns allow them to meet the eligibility criteria of agrievous and irremediable medical condition.” (P79)When referring to those experiencing pain without aclinical diagnosis, one participant stated “Those are theones that keep me awake at night.” There’s a lot of thingsabout C-7 that make me very uncomfortable.” (P92) An-other participant shared the challenges of working withthis complex population over the phone as acoordinator.So, there are people who call with psychiatric issuesand those can be very long and very difficult conver-sations because they don’t qualify and they feelPesut et al. BMC Health Services Research (2021) 21:1195 Page 11 of 16they’ve been, I quote, ‘screwed by the system’ repeat-edly. And I’ve had people say to me, ‘Well, thenyou’re forcing me to go find a gun or something.’ AndI don’t accept that. I just say, ‘No. I’m not. I’m tellingyou what the law says.' And remembering that that’sa phone conversation and we don’t have any visualor physical cues. (P89)A cry for help not MAIDThe conversations like the one described above wereoften perceived by healthcare providers as a cry for helprather than a request for MAID. “What we’ll find, espe-cially with, you know, C-7 on the table is that there’s alot of people coming forward who aren’t really looking forMAID” (P92). “I’ve had so many conversations withpeople about wanting to pursue MAID and then whenyou have a conversation and you realize they don’t wantto pursue it at all, you know, it’s other things that they’recrying out for.” (P84) These needs might arise from ef-fects of a devastating loss (e.g., spinal cord injury) orfrom a lack of basic needs such as housing, food, or so-cial connection. Participants did their best to connectthese individuals with necessary resources, but also rec-ognized that such resources might not be available in atimely manner. For example, persons suffering from painthey considered debilitating might have to wait 6 monthsfor a referral to a pain clinic. One option would be tofast-track services for clients who were applying forMAID, an option that could have numerous negativeconsequences. “And we don’t want that to happen be-cause we don’t want people to be arbitrarily asking aboutMAID in order to get the resources that they need. So,those are some of the concerns that our team has beentalking a lot about.” (P87) This then left the ethicalquestion of whether MAID was an acceptable optionwhen supports that would alleviate suffering existed butwere not accessible. One participant pondered the factthat the waiting period for MAID under C-7 was shorterthan the waiting period to access some specialist servicesin her area. “Access to consultants is going to be a chal-lenge. Access to consultants for people who actually haveconditions that they’re looking to treat is a challenge, so Iam anticipating problems in being able to access consult-ation services.” (P83)Bill C-7 was anticipated to bring new challenges dur-ing a time when healthcare providers were just gettingsettled with C-14.The legislation is moving faster than we have beenable to create grounding for. We’re constantly behindthe eight ball and constantly saying, “I’m sorry”, andconstantly trying to support patients while also tryingto figure it out. So, we’re happy to do this work thatneeds to be done but it’s going to be challenging. (P86)Over time, nurses had learned the inherent complex-ities associated with the original legislative conditions ofBill C-14, and therefore were expressing their reserva-tions about Bill C-7 from a highly informed and criticallyreflective perspective. Participants understood the poten-tial pitfalls within the new legislation and were awarethat they would need to work out how to safeguard pa-tients and ensure that the system was organized to re-spond appropriately to the evolving demand.DiscussionThis study has several limitations that should be consid-ered when applying the findings. The majority of partici-pants were from geographic areas within Canada whereMAID had already made significant inroads, as evidencedby higher prevalence. Therefore, not all of these findingswill necessarily be transferable to geographic contextswhere the prevalence of MAID is lower. Further, the ma-jority of our participants were in agreement with the ideaof MAID, at least in theory2, and so the views should notbe considered indicative of those opposed to MAID. Fi-nally, our sample included more registered nurses thannurse practitioners when nurse practitioners are the onlynurses in Canada permitted to assess for and provideMAID. Nevertheless, findings have important implicationsfor system level considerations relevant to the implemen-tation of Bill C-7. Notably, these concern the cultural cali-bration that is required after each substantive change toMAID law and the complex challenge of navigating siloedand inaccessible healthcare systems when the decisionalstakes are high.Cultural calibrationEvidence from other countries where assisted death hasbeen legal for a number of years suggest that calibrationoccurs as the system, and persons within the system, ad-just to incorporating assisted death as part of their prac-tice [32–35]. Hamarat, drawing upon an ethnographicstudy of assisted dying in two countries, suggested thatover time “aid-in-dying” becomes an “institution” in it-self that is “framed, bound, and structured by norms.”([36] p. 1) These “normativities” are structured throughlegal and regulatory frameworks, organizations, discur-sive practices, technical and bodily practices, and rela-tionships. The influence of relationships in developingthese norms was evident in a study conducted in Quebecprior to the legalization of assisted death that explorednurses’ intention to be involved. An important factor innurses’ decisions was the opinions of their colleagues, aform of social calibration to a morally complex act [37] .2 Participants will state that they agree with MAID but are less certainabout whether they could administer it or choose it for themselves.Pesut et al. BMC Health Services Research (2021) 21:1195 Page 12 of 16Findings from this study described a similar process ofsocial calibration. Nurses became more comfortable withMAID procedures, but more importantly, a culture ofopenness and trust developed which in turn led to de-creased stress in the work environment. Some referred tothis process as the normalization of MAID. However, thisdoes not imply a ‘slippery slope’ in which MAID was sim-ply being extended to more and more people with littlethought of consequences. Rather, normalization referredlargely to system processes that slowly became calibratedto the needs of patients and families and in which partici-pants adjusted themselves to the moral demands. Partici-pants also suggested that there was a component of theact that should never feel normal and they continued tofeel the emotional impact, similar to what Flemish nursesreported many years after the legalization of euthanasia inBelgium [38]. These findings of calibration stand in con-trast to our earlier interviews with nurses, conductedshortly after the legalization of MAID, in which partici-pants described an unprepared healthcare system that leftthem with few practice supports to do the morally com-plex work that was required with this new legal responsi-bility [19, 25, 27].Participants in this current study were anticipatingthat a similar calibration would be required under BillC-7, including new moral questions. Could they seethemselves participating in a MAID process where nat-ural death was no longer reasonably foreseeable? Couldthey participate in the MAID process when the meansto relieve suffering existed but not might be accessible?Would the healthcare system be prepared for it? Wouldthere be enough assessors and providers willing to dothis work? Participants were once again anticipating hav-ing to do the hard moral work of questioning their in-volvement in MAID.The implementation of Bill C-7 will likely necessitaterecalibration both at the social and systems level. An im-portant focus must be on influencing the developmentof norms toward high quality practice within a reflectiveethical context. Healthcare providers involved withMAID consider many aspects beyond the legality of eli-gibility and safeguards; their decisions are influenced bytheir own values and beliefs in each clinical encounter,and with varying degrees of self-knowledge [39, 40]. Assuch, working within functional and supportive teams isan important strategy to mitigate the effects of individ-uals working in isolation [19, 20, 41]. The developmentof moral communities of practice, supported by robustpolicy [42] are key to developing high quality, ethicalnorms. The importance of this type of community wasevident in our data when participants described how in-terpretation of eligibility criteria was a gestalt and whenthey described the normative expectations that shapedeligibility assessments.Navigating a siloed and inaccessible systemsThis, however, leads to the question of how to set upservices. Do we create one more clinical program withinan already deeply siloed and disconnected system, and ifso, how might that new program be successfully inte-grated? The implementation of Bill C-7 provides aunique opportunity to improve upon the implementa-tion process that occurred under Bill C-14. There is ro-bust evidence that high quality MAID care dependsupon skillful communication, knowledge of suffering atend-of-life, and resources that acknowledge the time re-quired to do the work well [20, 41]. In Canada, a num-ber of approaches have been used to deliver MAID care:from well-developed clinical programs that span themandate of research, education and practice to assessorsand providers who work alone and travel large geo-graphic areas to provide services. Given Canada’s diversesociocultural and geographic nature, there will be noone-size-fits-all approach.Participants in this study explored the possibilities anddrawbacks of integrating MAID and palliative care pro-grams; although, this was a contentious proposal becauseof what some would argue are different philosophies ofcare. Yet despite these philosophical differences, MAIDproviders and palliative care providers serve the samepopulation so an approach that puts patients at thecentre of systems would be desirable from the centralstandpoint of the patient who is looking for the best pos-sible end-of-life. Further, palliative care clinicians arehighly skilled in addressing issues of suffering, in im-proving quality of life, and in conducting care planningconversations which are all critically important aspectsof MAID. However, among the palliative care commu-nity in Canada there remain significant concerns aboutthe insufficient availability of palliative care which leadsto inequities in patient choices [14]. Participants in thisstudy cited significant equity concerns about access toboth MAID and palliative care and highlighted the polit-ical tensions around funding allocations. As explained inthe background to this paper, the evidence about the de-gree to which patients have access to palliative care inCanada is difficult to interpret.One way to inform this debate is to examine the tra-jectories of other countries where assisted death hasbeen legal for a decade or more to explore how these re-lationships have evolved and to determine what the ef-fect has been on palliative care. Evidence to-date hasindicated that where euthanasia is legal, the relationshipsbetween euthanasia and palliative care range from con-flicted to cooperative [43]. Further research is requiredto better understand the factors that influence these re-lationships. However, evidence to-date has also indicatedthat palliative care improves after the implementation ofassisted death [44]. But, these findings need to bePesut et al. BMC Health Services Research (2021) 21:1195 Page 13 of 16contextualized within the policy commitments of thosecountries. For example, in Luxembourg, at the sametime that assisted death was decriminalized, palliativecare was declared a basic patient right, universal accessto palliative care was funded, and mandatory targetswere set for services [44]. Canada’s approach has beenmuch softer with the development of a framework [17]and some targeted funding for improvement. We do notyet know what the real effects of that Canadian approachhave been.Bill C-7, however, brings new complexities that meansthat system integration between MAID and palliativecare is a less viable approach. Within the two-track sys-tem where reasonably foreseeable natural death is thedeterminant of what track a person gets assigned, anumber of these MAID applicants will not be incurablyill and will require expertise from social and mentalhealth services. For a person considering MAID, whetherdeath is foreseeable or not, the most important health-care intervention is relational and dialogical in nature.Best practices entail a relational interaction between theapplicant and a knowledgeable healthcare provider inwhich the suffering story can be shared, mitigation strat-egies can be considered, and the request is consideredwithin the constellation of a life story [39]. In countrieswhere MAID is provided primarily through the primarycare system, long term relationships between physiciansand patients support this best practice. However, inCanada the system often depends upon assessors andproviders who have no prior knowledge of the patient.In the context of centralized coordination services beingthe primary means of delivery, different strategies mustbe enacted to ensure this relational and dialogical ap-proach. Further, because of the requirements of C-7,these persons must have superb relational and commu-nication skills; extensive knowledge of the health and so-cial care system to ensure that patients know what isavailable to them to alleviate their suffering; exceptionaladvocacy skills to help persons get access to those ser-vices; and sufficient time and remuneration to do thiscomplex work.In jurisdictions where MAID services are centrally coordi-nated, some of the participants in this study were alreadyperforming a role that met these criteria. These were thenurse coordinators of MAID services. As the first contact forthe public, they had learned to screen and navigate clients toensure that they did not enter the eligibility process if theywere likely to be disappointed. They had learned to navigateclients to services that would help to alleviate their suffering.Further, they were performing an advanced practice role asthey provided public and healthcare provider education, cre-ated policies, and served as connectors among the many per-sons involved in a MAID death. Creating such systems ofnavigation is an important goal cited in the NationalFramework for Palliative Care in Canada [17]. The model ofcare that has been adapted for the Canadian context existsbut significant systems calibration is required to expands itsscope to meet the complexity required of Bill C-7.ConclusionsCanada has made significant inroads since 2016 inadjusting the healthcare system to meet the needs of pa-tients and families seeking a MAID death. The processof MAID has become increasingly normalized even asthe gravity of the event has retained its emotional im-pact. MAID assessors are developing consensus aboutclinical application of the legal criteria and nurses arefinding ways to support a patient-centered approach tocare. However, increased demand for MAID, and a risein the complexity of clients requesting MAID, is puttingsignificant strain on the system. Bill C-7 is raising com-plex new issues, including moral concerns about extend-ing MAID to new populations, access challenges to theservices required to alleviate the suffering of this popula-tion, further increases in workload, and a potentialshortage of assessors and providers willing to stay en-gaged with MAID work. Such challenges may be par-tially met through the development and expansion ofthe coordinator/navigator role. Such individuals will re-quire superb communication and advocacy skills, exten-sive knowledge of the health and social care system, andsufficient time to do this complex role well.These findings provide important insights into thepractical challenges facing health systems as they seek tocreate best practices around MAID care. They provideinsights for policy and healthcare decision-makers ashealth systems adapt to the evolution of MAID throughBill C-7. While such insights may be specific to the im-mediate situation in Canada, they will have relevance forother countries considering legalizing assisted death. Fi-nally, they make apparent the exceptionally importantperspective that nurses bring to the development of sys-tems, strategies and best practice approaches as we ex-pand the available options for all persons facing end-of-life care considerations.AbbreviationsMAID: Medical assistance in dying; NP: Nurse practitionerSupplementary InformationThe online version contains supplementary material available at https://doi.org/10.1186/s12913-021-07222-5.Additional file 1.AcknowledgementsWe would like to thank the research participants who gave so generously oftheir time and expertise.Pesut et al. BMC Health Services Research (2021) 21:1195 Page 14 of 16Authors’ contributionsBP made substantial contributions to the conception and design of thestudy; data collection and interpretation; and drafting and revising themanuscript. ST made substantial contributions to the conception and designof the study; data collection and interpretation; and drafting and revising themanuscript. DKW made substantial contributions to the conception anddesign of the study; data collection and interpretation; and drafting andrevising the manuscript. CS made substantial contributions to theconception and design of the study; and drafting and revising themanuscript. MH made substantial contributions to data collection andinterpretation; and drafting and revising the manuscript. GP made substantialcontributions to the drafting and revising the manuscript. KC madesubstantial contributions to the conception and design of the study; datacollection and interpretation; and drafting and revising the manuscript. Allauthors have approved the submitted version and agreed both to bepersonally accountable for the author’s own contributions and to ensurethat questions related to the accuracy or integrity of any part of the work,even ones in which the author was not personally involved, areappropriately investigated, resolved, and the resolution documented in theliterature.FundingThis study is funded through Canadian Institutes of Health Research ProjectGrants PJT-148655 and #PJT-169144. The funding agency had no role in thedesign of the study; in the collection, analysis, or interpretation of the data,or in writing the manuscript.Availability of data and materialsThe datasets used and/or analysed during the current study are availablefrom the corresponding author on reasonable request.DeclarationsEthics approval and consent to participateThis study received ethical approval through the BehaviouralResearch Ethics Board of the University of British Columbia OkanaganCertificate # H20-00486. Research was performed in accordance with theDeclaration of Helsinki. Participants provided written informed consent thatincluded permission to publish direct quotes.Consent for publicationNot applicable.Competing interestsThe authors declare they have no competing interests.Author details1School of Nursing, Principal Research Chair in Palliative and End-of-Life Care,University of British Columbia Okanagan, ARTS 3rd Floor, 1147 ResearchRoad, BC V1V 1V7 Kelowna, Canada. 2School of Nursing, University of BritishColumbia, BC V6T 2B5 Vancouver, Canada. 3School of Nursing, University ofOttawa, Ontario K1H 8M5 Ottawa, Canada. 4School of Nursing, University ofNorthern British Columbia, 3333 University Way, BC V2N 4Z9 Prince George,Canada. 5School of Nursing, University of British Columbia Okanagan, ARTS3rd Floor, 1147 Research Road, BC V1V 1V7 Kelowna, Canada. 6Public Health,Sociology & Ethics of the End of Life, End-of-Life Care Research Group, GhentUniversity & Vrije Universiteit Brussel (VUB), C. Heymanslaan 10, B-9000 Ghent,Belgium.Received: 9 July 2021 Accepted: 26 October 2021References1. Nicol J, Tiedemann M. Legislative summary: Bill C-14: an act to amend thecriminal code and to make related amendments to other acts (MedicalAssistance in Dying). 2018. p. 24. Publication No. 42-1-C14-E. Available from:https://lop.parl.ca/sites/PublicWebsite/default/en_CA/ResearchPublications/LegislativeSummaries/421C14E.2. Downie J, Scallion K. Foreseeably unclear the meaning of the “reasonablyforeseeable” criterion for access to medical assistance in dying in Canada.Dalhousie Law J. 2018;41(1):23–57.3. Downie J, Chandler JA. Interpreting Canada’s Medical Assistance in Dyinglegislation. 2018. Institute for Research on Public Policy. Available from:https://on-irpp.org/2I7yQ6p.4. McMorrow T. MAID in Canada: Debating the constitutionality of Canada’s newMedical Assistance in Dying law. Queens Law J. 2018;44:69. (CANLIIDocs 11038).5. Council of Canadian Academies. The state of knowledge on MedicalAssistance in Dying where a mental disorder is the sole underlying medicalcondition. 2018. Available from: https://cca-reports.ca/wp-content/uploads/2018/12/The-State-of-Knowledge-on-Medical-Assistance-in-Dying-Where-a-Mental-Disorder-is-the-Sole-Underlying-Medical-Condition.pdf.6. Council of Canadian Academies. The state of knowledge on advancerequests for Medical Assistance in Dying. 2018. Available from: https://cca-reports.ca/wp-content/uploads/2019/02/The-State-of-Knowledge-on-Advance-Requests-for-Medical-Assistance-in-Dying.pdf.7. Council of Canadian Academies. The state of knowledge on MedicalAssistance in Dying for mature minors. 2018. Available from: https://cca-reports.ca/wp-content/uploads/2018/12/The-State-of-Knowledge-on-Medical-Assistance-in-Dying-for-Mature-Minors.pdf.8. Health Canada. Second annual report on Medical Assistance in Dying inCanada 2020. 2021. Available from: https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying/annual-report-2020/annual-report-2020-eng.pdf.9. Robertson WD, Beuthin R. A reveiw of Medical Assistance in Dying onVancouver Island: the first two years July 2016-July 2018. 2018. Availablefrom: https://www.islandhealth.ca/sites/default/files/2018-11/maid-report-2016-2018.pdf.10. Nicol J, Tiedeman M. Legislative summary of Bill C-7: an act to amend thecriminal code (Medical Assistance in Dying). 2020. p. 20. Publication No. 43-2-C7-E. Available from: https://lop.parl.ca/sites/PublicWebsite/default/en_CA/ResearchPublications/LegislativeSummaries/432C7E.11. Canada Department of Justice. Canadian charter of rights and freedoms.1982. Available from: https://www.justice.gc.ca/eng/csj-sjc/rfc-dlc/ccrf-ccdl/resources-ressources.html#copy.12. Canada Department of Justice. What we heard report: a public consultationon Medical Assistance in Dying (MAID). 2020. Available from: https://www.justice.gc.ca/eng/cj-jp/ad-am/wwh-cqnae/toc-tdm.html.13. Canadian Society of Palliative Care Physicians. Key messages: palliative careand Medical Assistance in Dying. 2019. Available from: http://www.cspcp.ca/wp-content/uploads/2019/05/CSPCP-Key-Messages-PC-and-MAiD-May-2019-FINAL.pdf.14. Canadian Hospice Palliative Care Association, Canadian Society for PalliativeCare Physicians. CHPCA and CSPCP - joint call to action. 2019. Availablefrom: https://www.chpca.ca/news/chpca-and-cspcp-joint-call-to-action/.15. Canadian Institute for Health Information. Access to palliative care inCanada. Ottawa: CIHI; 2018. Available from: https://www.cihi.ca/en/access-to-palliative-care-in-canada.16. Trachtenberg AJ, Manns B. Cost analysis of Medical Assistance in Dying inCanada. CMAJ. 2017;189:E101-105.17. Health Canada. Framework on palliative care in Canada. 2018. Availablefrom: https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/palliative-care/framework-palliative-care-canada.html.18. Parliamentary Budget Officer. Federal investments in palliative care. 2020.Available from: https://www.pbo-dpb.gc.ca/en/blog/news/BLOG-2021-007--federal-investments-in-palliative-care--investissements-gouvernement-federal-dans-soins-palliatifs#:~:text=Conclusion,today%20C%20specifically%20for%20palliative%20care.19. Pesut B, Thorne S, Schiller CJ, Greig M, Roussel J. The rocks and hard placesof MAiD: a qualitative study of nursing practice in the context of legislatedassisted death. BMC Nurs. 2020;19:12. Available from: https://doi.org/10.1186/s12912-020-0404-5.20. Oczkowski SJW, Crawshaw D, Austin P, Versluis D, Kalles-Chan G, Kekewich M,Curran D, Miller PQ, Kelly M, Wiebe E, et al. How we can improve the quality ofcare for patients requesting Medical Assistance in Dying: a qualitative study ofhealth care providers. J Pain Symptom Manage. 2021;61(3):513.21. Khoshnood N, Hopwood M-C, Lokuge B, Kurahashi A, Tobin A, Isenberg S,Husain A. Exploring Canadian physicians’ experiences providing MedicalAssistance in Dying: a qualitative study. J Pain Symptom Manage. 2018;56(2):222.22. Ho A, Joolaee S, Jameson K, Ng C. The seismic shift in end-of-life care:palliative care challenges in the era of medical assistance in dying. J PalliatMed. 2021;24(2):189–94.Pesut et al. BMC Health Services Research (2021) 21:1195 Page 15 of 1623. Mathews JJ, Hausner D, Avery J, Hannon B, Zimmermann C, Al-Awamer A.Impact of Medical Assistance in Dying on palliative care: a qualitative study.Palliat Med. 2021;35(2):447–54.24. Stewart DE, Viens P, Muralidharan O, Kastanias P, Dembo J, Riazantseva E. E-Survey of stressors and protective factors in practicing Medical Assistance inDying. J Palliat Med. 2021. Available from: https://doi.org/10.1089/jpm.2020.0664.25. Pesut B, Thorne S, Storch J, Chambaere K, Greig M, Burgess M. Riding anelephant: a qualitative study of nurses’ moral journeys in the context ofMedical Assistance in Dying (MAiD). J Clinic Nurs. 2020;29 (19-20):3870–81.26. Ball IM, Hodge JD, Jansen S, Nickle S, Sibbald RW. A Canadian academichospital’s initial MAiD experience: a health-care systems review. J PalliatCare. 2019;34(2):78–84.27. Pesut B, Thorne S, Schiller C, Greig M, Roussel J, Tishelman C. Constructinggood nursing practice for Medical Assistance in Dying in Canada: aninterpretive descriptive study. Glob Qual Nurs Res. 2020. Available fromhttps://doi.org/10.1177/2333393620938686.28. Hales BM, Bean S, Isenberg-Grzeda E, Ford B, Deslby D. Improving theMedical Assistance in Dying (MAID) process: a qualitative study of familycaregiver perspectives. Palliat Support Care. 2019;17(5):590–5.29. Brown J, Goodridge D, Harrison A, Kemp J, Thorpe L, Weiler R. Careconsiderations in a patient- and family-centered Medical Assistance inDying program. J Palliat Care. 2020. Available from: https://doi.org/10.1177/0825859720951661.30. Thorne S. Interpretive description: qualitative research for applied practice.2nd ed. New York: Routledge; 2016.31. Glaser BG, Strauss AL. The discovery of grounded theory: atrategies forqualitative research. Chicago: Aldine Publishing Company; 1967.32. Dierickx S, Deliens L, Cohen J, Chambaere K. Involvement of palliative carein euthanasia practice in a context of legalized euthanasia: a population-based mortality follow-back study. Palliat Med. 2018;32(1):114–22.33. Dierickx S, Deliens L, Cohen J, Chambaere K. Euthanasia in Belgium: trendsin reported cases between 2003 and 2013. CMAJ. 2016;188(16):E407–14.34. Onwuteaka-Philipsen BD, Brinkman-Stoppelenburg A, Penning C, de Jong-KrulGJF, van Delden JJM, van der Heide A. Trends in end-of-life practices beforeand after the enactment of the euthanasia law in the Netherlands from 1990to 2010: a repeated cross-sectional survey. Lancet. 2012;380:908–15.35. van der Heide A, van Delden JJM, BD O-P. End-of-life decisions in theNetherlands over 25 years. N Engl J Med. 2017;377(5):492–4.36. Hamarat N, Pillonel A, Berthod M-A, Castelli Dransart DA, Lebeer G:Exploring contemporary forms of aid in dying: an ethnography ofeuthanasia in Belgium and assisted suicide in Switzerland. Death Stud. 2021.Available from: https://doi.org/10.1080/07481187.2021.1926635.37. Lavoie M, Godin G, Vezina-Im L-A, Blondeau D, Martineau I, Roy L.Psychosocial determinants of nurses’ intention to practice euthanasia inpalliatvie care. Nurs Ethics. 2016;23(1):48–60.38. Bellens M, Debien E, Claessens F, Gastmans C, Dierckx de Casterle B. “It isstill intense and not unambiguous.” Nurses’ experiences in the euthanasiacare process 15 years after legalisation. J Clin Nurs. 2019;29:492–502.39. Gupta M, Blouin S. Ethical judgment in assessing requests for medicalassistance in dying in Canada and Quebec: what can we learn from otherjurisdictions? Death Stud. 2021. Available from https://doi.org/10.1080/07481187.2021.1926636.40. van Tol DG, Rietjens JAC, van der Heide A. Empathy and the application ofthe ‘unbearable suffering’ criterion in Dutch euthanasia practice. HealthPolicy. 2012;105:296–302.41. Fujioka JK, Mirza RM, McDonald PL, Klinger C. Implementation of medicalassistance in dying: a scoping review of health care providers’ perspectives.J Pain Symptom Manage. 2018;55(6):1564–76.42. Lemiengre J, Gastmans C, Schotsmans P, Dierckx de Casterle B. Impact ofwritten ethics policy on euthanasia from the perspective of physicians andnurses: a multiple case study in hospitals. AJOB Prim Res. 2010;1(2):49–60.43. Gerson SM, Koksvik GH, Richards N, Materstvedt LJ, Clark D. The relationship ofpalliative care with assisted dying where assisted dying is lawful: a systematicscoping review of the literature. J Pain Symptom Manage. 2020;59(6):1287.44. Chambaere K, Bernheim JL. Does legal physician-assisted dying impededevelopment of palliative care? The Belgian and Benelux experience. J MedEthics. 2015;41(8):657–60.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Pesut et al. BMC Health Services Research (2021) 21:1195 Page 16 of 16
Article
eng
Reviewed
Vancouver : University of British Columbia Library
BioMed Central
Attribution 4.0 International (CC BY 4.0)
Faculty
Researcher
Medical assistance in dying
End of life
Nursing
Qualitative
Legislation
Healthcare systems
Navigating medical assistance in dying from Bill C-14 to Bill C-7: a qualitative study
Text