Introduction

A new professional role is emerging in the Canadian healthcare system for individuals who coordinate Medical Assistance in Dying (MAiD) services within organizations and regions. The MAiD care coordinator (MCC) role developed concurrently in various institutions and regions across Canada after MAiD legislation came into effect following the passage of amendments to the federal criminal code (called “Bill C-14”) that decriminalized MAiD in 2016 (Beuthin, 2018). The role exists in a variety of institutions, providing Care Coordination in hospitals, in health regions and in entire provinces (North West LHIN, 2021). The aim of this role is to create a sustainable model of MAiD care which supports timely access for patients, provides system navigation, and ensures the rigor of the MAiD process; including adherence to the legal standards. The intention of MAiD Care Coordination is to alleviate components of the heavy administration burden on physicians and nurse practitioners, who carry significant legal and moral risks by engaging in MAiD practice, and to help patients and families navigate access to this new service.

MCCs come from diverse professional backgrounds, such as nursing, psycho-spiritual care, speech-language pathology, and social work. As we write, no specific qualifications, training or credentials exist for this role. Thus, there is a need to define standards of practice and a code of ethics for MAiD Care Coordination for three main reasons:

  1. (1)

    The variety of backgrounds mean specific professional colleges do not regulate many of the essential tasks performed by MCCs;

  2. (2)

    Patients seeking MAiD are often vulnerable and face challenges in accessing services. They depend upon the professionalism and competencies of MCCs to help them navigate a complex clinical and legal process;

  3. (3)

    There are substantive consequences for MAiD providers/assessorsFootnote 1 if the legal and regulatory obligations intrinsic to the MAiD process are not met, including disciplinary action from their professional college, up to and including criminal charges.

MCCs can have a great deal of power and influence as the primary gatekeepers to MAiD care in many organizations and regions. Additionally, MCCs have commitments to multiple stakeholders including patients and families, MAiD providers/assessors, health professionals providing referrals, and the organizations that employ them. As such, MCCs have to manage competing obligations and priorities, and currently have no practice standards to guide these decisions.

The purpose of this paper is to offer an initial description of the emerging professional practice of MAiD care coordination, specifically: the core commitments; roles and responsibilities; core competencies; ethical issues commonly encountered by MCCs; and a proposed code of ethics. These are offered as a preliminary scaffolding for the development of formal professional practice guidelines as MAiD evolves. These proposed guidelines were developed collaboratively over a two year period, from 2019 to 2021, in consultation with MCCs from across Canada, as well as other stakeholders, including operational and medical directors of MAiD services. The purpose of this project is to support high-quality, equitable and fair access to MAiD by ensuring that MCCs are governed by a common set of values and principles specific to their unique role and scope of practice.

Methods

This work utilized both quantitative and qualitative methods for gathering the perspectives of MCCs on the proposed documents, constituting a mixed-methods approach to stakeholder engagement that was highly reflexive, narrative, and auto-ethnographic in nature.

Collecting Stakeholder Perspectives

An email invitation describing the purpose of the draft documents was sent to MCCs along with initial drafts of the two proposed documents (Appendix 1, 3: “Roles and Responsibilities of MAiD Care Coordinator” and “Core Competencies of a MAiD Care Coordinator”) and a link to an anonymous, online survey to solicit feedback (see Appendix 4). The survey included demographic questions, Likert Scale questions and open-ended questions. The email invitation was sent to approximately 25 MCCs from across Canada. The email invitation asked the recipient to forward the invitation to other MCCs, constituting a snowball method of sampling. The draft code of ethics (see Table 1 “Code of Ethics for MAiD Care Coordinator”) was created after the survey was fielded so it was circulated amongst MCCs across Canada by email to elicit their thoughts and feedback with respect to its content and applicability. Our stakeholder engagement process constitutes a qualitative participatory approach to understanding the perspectives of MCCs working in diverse contexts across Canada.

Table 1 Demographic characteristics of survey respondents
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Analysis

Descriptive statistics for the demographic variables and Likert scale questions were analyzed using the Survey Monkey software. The suggestions related to the three different documents (including items to emphasize, items identified as not being part of the respondent’s MCC role, and items to add) were reviewed and discussed at three meetings by the three authors and changes were made to the documents based on consensus. The open-ended responses soliciting general feedback on the documents, as well as the questions about challenges and rewards experienced as a MCC, and how participants would like to see the MCC role evolve in the future, were analyzed using conventional content analysis (Hseih & Shannon, 2005).

Outcomes of Stakeholder Engagement

Demographics

A total of 19 individuals completed the survey. We cannot calculate a response rate as snowball sampling was the primary methodology of distribution and it is unknown how many MCCs received the email invitation.

Over three quarters (79%) of the survey respondents were female and nearly two-thirds (63%) indicated they did MAiD work in the hospital setting. Over two-thirds (68%) had worked as a MAiD Coordinator for 3 or more years and over half (58%) listed their primary profession as nursing. Survey respondents were from only three provinces: Ontario (53%), Quebec (26%) and British Columbia (21%). Demographic characteristics are summarized in Table 1.

Survey respondents were engaged with reviewing the draft documents and identifying items that were missing or that needed greater emphasis, or items that were not relevant to their practice as a MCC. There were divergent opinions about the Roles and Responsibilities document, with a third (31.2%) identifying roles and responsibilities in the document that were not part of their job as MCCs, and nearly two-thirds (63%) identifying additional roles and responsibilities that were not included in the draft document.

However, there was more consensus around the Core Competencies and Code of Ethics documents: just under a third (31.2%) offered additional items to the draft Core Competencies document and less than a fifth (15.8%) offered additional items for the Code of Ethics. Further elaboration on this data and the feedback provided by stakeholders can be found in Appendix 4. On the whole, however, there was significant agreement amongst participating MCCs with the content of all proposed documents. Feedback and additional items offered by participants were incorporated into the final drafts presented here, based on consensus of the three authors.

Key Findings and Implementation

Our experience and findings through consultation with MCCs across the country yielded information about this emerging role that can be categorized in the following five ways: (1) core commitments, roles and responsibilities of the MCC, (2) core competencies of the MCC, (3) ethical issues in MAiD care coordination, (4) code of ethics for MAiD care coordination, and (5) support for MAiD care coordination.

Core Commitments, Roles and Responsibilities of the MAiD Care Coordinator

The goal of MAiD care coordination is to facilitate patient choice and access to high quality MAiD services within the scope of the law and professional regulations, while ensuring MAiD providers/assessors are supported and institutional policies are followed. Thus, the core commitment of care coordinators is to quality and accountability, balancing the needs and interests of Patient, Provider/Assessor, and Institution within the current legal/regulatory context (see Fig. 1).

Fig. 1
figure 1

Interaction of the core commitments and the law

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Commitments to Patients

Care coordinators must always be aware that patients seeking MAiD, and their families, can be vulnerable as they are requesting a life-ending procedure due to intolerable suffering. Care coordinators must always be mindful of the legacy of the MAiD process for the family members who accompany their patients through the process.

Commitments to Providers/Assessors

Being a MAiD provider/assessor is voluntary, and it is often an “add on” to a full-time clinical role. Providers/assessors shoulder many responsibilities in providing MAiD for a patient, including: the emotional labour of supporting a patient/family through the dying process; ensuring all legal requirements are met; documenting the process thoroughly; and collaborating with other care providers/assessors. Care coordinators work with MAiD providers/assessors to support their readiness and willingness to step into cases by alleviating administrative burdens and providing support to navigate the complexities of MAiD cases. The relationship between care coordinator and provider/assessor aims to mitigate burdens and risks to ensure the case has a positive legacy for the physician/nurse practitioner.

Commitments to Institutions

Where MAiD is provided in an institutional context—such as a hospital, long-term care facility, hospice or group practice—the institution usually has its own internal policies and procedures to govern MAiD practice. These may include: standardized forms and guidelines, referral processes, conflict resolution and reporting processes, data collection, discharge or admission pathways, or procedures for procuring appropriate clinical consultations for patients exploring MAiD. Care coordinators must be familiar with the institutional policies and norms governing MAiD practice, and support adherence to these procedures to ensure accountability of the service. In addition, the care coordinator must be familiar with the variety of clinical services offered within the institution and community, and support patients to access appropriate services to assist them as they navigate their care options: such as social work, specialist consultations, palliative care services, psycho-spiritual care, etc. The other clinicians and teams supporting the patient also frequently need guidance from the MCC, including coaching, education and reporting support.

Commitment to MAiD Legal and Regulatory Compliance

Because MAiD is governed by the federal criminal code, the practice carries serious legal and professional consequences if compliance is less than perfect, including risks to provider/assessor reputation, to institutional reputation, and legal liability. Care coordinators support providers/assessors and institutions in upholding MAiD standards of practice by addressing barriers to access, ensuring compliance with standards of practice, supporting reporting and documentation requirements, participating in quality improvement activities, etc. Detailed description of the roles and responsibilities of a MCC under each of these core commitments is reflected in Appendix 1.

In summary, MCCs must explicitly acknowledge their commitments to all parties in their role. Their work should not be focused on the completion of MAiD provisions alone, but should balance the patient experience and family expectations, with provider/assessor experience, and compliance with institutional and legal obligations. Success in the MAiD Care Coordination process cannot be measured solely by the number of provisions and eligibility assessments completed—success is demonstrated when the care coordinator has acted as the custodian for a fair, transparent and high-quality process, balancing the interests of all stakeholders. This ensures the sustainability of the MAiD service for future patients. Suggested indicators for evaluating the performance of MCCs could include: the timeliness in responding to a MAiD request; support for clinicians who want to make an effective referral (including those with a conscientious objection); training new clinicians in the assessment process; helping clinical teams facilitate access to the MAiD service by providing education/capacity building; patient/family/provider/assessor experience with the MCCs (re: professionalism, compassion, effectiveness, etc.); tracking and reporting MAiD activities to institutional leaders; providing support and information to patients/families throughout the process; updating policies and guidelines.

Core Competencies of a MAiD Care Coordinator

The unique role of the MCC encompasses a set of core competencies that are not typically seen in a job description or listed in the professional practices of regulatory colleges. Although there is overlap with the core competencies of other health professions, the complexity of the core commitments of this position—at the nexus of patient, provider/assessor, institution and law—requires a unique combination of core competencies to support sustainable, high-quality MAiD practices. An expanded description of the core competencies was developed (Appendix 3) using the Core Competencies of Healthcare Ethics Consultation (Arnold, 2017) as a basis, due to the similarity between the roles of MCCs and Ethics Consultants in terms of the necessity of navigating core commitments to multiple stakeholders in a complex and evolving context. In addition, the typical process that a MCC follows in supporting a patient request for MAiD from initial inquiry to follow-up is detailed in Appendix 2.

Interpersonal, Critical Thinking, and Process Skills

Analytical and “soft skill” competencies are critical for effectively communicating and fostering positive, trusting relationships in the context of responding to MAiD requests. MCCs must have the capacity to pause and reflect on their own personal limitations and values, while supporting the values and emotions of patients, families, providers/assessors and other health care professionals. Care coordinators must be able to address process barriers and refer problems to appropriate leaders. Managing these complexities requires that the care coordinator identify any resources that may be helpful during the process, and possible solutions within the context.

Knowledge of MAiD Legislation, Regulations, and Context

It is essential for care coordinators to have a functional knowledge of the current and evolving MAiD legislation, as well as an understanding of the healthcare system to support patients in the MAiD journey. Furthermore, providing high quality care includes understanding related regulations and context, such as: professional rights and obligations, confidentiality, patient autonomy, informed consent, cultural and religious diversity, grieving and bereavement processes, and the provision of care across a range of programs and settings. Finally, a MCC should ensure they are familiar with the code of ethics for their own profession, and guidelines for their own professional conduct relevant to end of life and MAiD practice.

Evaluative and Quality Improvement Skills

MCCs are often responsible for data collection, process improvement and quality of care, working in collaboration with MAiD providers/assessors. These skills may include: data collection; retrospective review of cases; identifying underlying systems issues and possible barriers to accessing MAiD care; soliciting feedback and developing QI processes.

Ethical Issues in MAiD Care Coordination

This section describes commonly observed ethical challenges encountered by MCCs and proposed methods for navigation through the use of case-studies. Through fictional case studies based on lived experiences, these cases explore the ethical dimensions of the questions that frequently emerge in this professional role, and how these complex issues might be addressed using an ethics framework.

Case Study 1: Patient does not want his Family to Know he is Going Through MAiD PROCESS

John was diagnosed with lung cancer in 2017. By the time he presented to the MAiD team the cancer had metastasized to several other areas and any treatment he was undergoing was palliative in nature. He is an inpatient on a palliative care ward within the hospital system. John disclosed to the MAiD team that he would like to keep his request for MAiD confidential from his family as they are quite religious and he does not feel that they would be accepting of his desire to receive MAiD at end of life.

It is the job of the MCC to uphold the confidentiality of not only the patient, but also the family, the MAiD providers and the MAiD assessors. The ethical dilemma in this case then becomes one of addressing how to uphold the confidentiality requested by the patient, counterbalanced by staff expectation that family are actively involved in the patient’s end of life choices. Consideration must also be given to the discomfort of the health care team regarding feelings of “hiding” this information from the family.

The first priority for the MCC is upholding the confidentiality that the patient has requested. It is the job of the MCC therefore to: inform the healthcare team of what can be shared with family, and make sure that confidentiality is maintained as per patient’s wishes. The MAiD team/care coordinator can offer support to the clinical team as they may be struggling with the inability to openly disclose this decision to family. It is important to use the greater interdisciplinary team in order to provide support to the patient, the family and the staff, such as social work and spiritual care. It may be appropriate to engage with John around his reasoning for not disclosing to family. In some cases, a patient may feel that with support they may be able to speak to their family about their wishes, and their end of life plan.

Confidentiality and duty to the patient are the ethical considerations at the forefront of this case study. In addition, acknowledging the moral distress and concerns of healthcare providers is important. A clash of ethical values related to the dynamics of a MAiD case may lead health care providers to feel challenged in navigating their personal and professional values. It is important that the MCC rely on their core competencies and code of ethics to guide them through these complex situations.

Case Study 2: Physician is a Conscientious Objector

Dr. Jones is an oncologist and a conscientious objector to MAiD. She has just received a request for MAiD from one of her patients. The relationship that Dr. Jones has with this patient spans many years and she cares deeply about her. She wants to make sure that the patient does not feel abandoned at this vulnerable time. That being said, she also feels strongly that she cannot be involved in the MAiD process. The College of Physicians and Surgeons of Ontario (CPSO) outlines what is required by a physician who conscientiously objects to providing MAiD; making an effective referral is one of the expectations (CPSO, 2022). When Dr. Jones calls the MCC, the anxiety in her voice is obvious. She wants to make sure she is following the rules as outlined by her college and in the legislation but at the same time feels strongly about her own conscience and does not want to participate in MAiD.

It is the job of the MCC to support the physician in making an effective referral to ensure appropriate patient access, while also acknowledging the physician’s moral conflict. The MCC also helps the physician to understand their roles and responsibilities legally, such as federal reporting, and their professional college guidelines, including connecting them to appropriate physician peer supports. Finally, once the effective referral is made it is the role of the MCC to allow the physician to be as involved or uninvolved as they feel comfortable in alignment with their personal and professional values.

If the MCC can create a safe and effective place for conscientious objectors to make referrals without judgement, then they are contributing to good patient access. In our experience, a conscientious objector is more likely to refer a patient to an appropriate MAiD provider or assessor in the future if they feel that their moral values have been respected, while simultaneously being empowered to fulfill their professional obligations.

Code of Ethics for the MAiD Care Coordinator Role

The following proposed code of ethics for the MCC role is informed by the ethical issues experienced by MCCs and the core commitments of the role. We propose that all MCCs also abide by the code of ethics for their primary profession (e.g., social work, psycho-spiritual care, nursing etc.). The code of ethics for the MCC role includes the following components: integrity; autonomy, dignity and access to care, excellence in practice, education and support for colleagues (Table 2).

Table 2 Proposed code of ethics for MAiD care coordinators
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Each of these ethical considerations are equally important in order to provide best practice from a MAiD care coordination perspective. A MCC who acts without integrity has the possibility of doing harm to themselves, their providing/assessing team, as well as others within the patient’s circle of care. Honouring a patient’s autonomy and dignity while ensuring that there is transparency in access to care is critical to a patient-driven practice like MAiD. Excellence in practice is important to mitigate the risks involved for all parties given the high-risk nature of MAiD practice. Providing education for MAiD, assessors/providers, clinical teams and patients and families, helps us to achieve excellence in practice. Support for our colleagues helps us to build and maintain a sustainable, resilient practice to ensure access for patients now and in the future.

Supports for MAiD Care Coordination

In order to provide high-quality care coordination, the MAiD coordinator requires a supportive structure, environment and access to appropriate resources. Working in a dyad model of care with several other back-up MAiD coordinators can ensure a more sustainable model of care for coordination. Having two MAiD coordinators work together, where possible, creates space for inter-professional relationships that allow for mutual support, collaboration, knowledge translation, and room to highlight individual professional strengths, making for better overall coordination.

The creation of an interdisciplinary team model has the potential to sustain the Care Coordination role, given that implementing a team-based structure ensures MAiD care coordination isn’t delivered in isolation. Care coordinators should have allotted time and budget for their position, rather than attempting to do this work off the side of their desk. Cultivating a culture of respect for the importance of the role of MCC through organizational leadership, teamwork and appropriate working conditions, as well as continuous professional development, is essential for the care coordinator to feel equipped to fulfill the full scope of their responsibilities and the complexity of the issues they navigate.

Discussion

Due to the relative novelty of the role of MCC, there is as yet no consensus on how the coordinator role should be defined, and no governing body that coordinators are accountable to for their practice. This paper is a starting point for defining a framework for a high quality, sustainable, and successful case coordination model. It is intended to be a tool to guide the creation of MCC roles, and to help MCCs  advocate for additional resources, and advance current practice.

MCCs are beginning to collaborate to advance their practice and create a shared understanding of the roles, responsibilities and ethics of this nascent profession. The creation of the Ontario MAiD coordinator community of practice (COP) in 2021, is one example of how care coordinators are working together to define their role, advocate for more resources and funding, support each other through legislation changes, ensure consistency in practice, and work together on developing policies and procedures. This group could be an additional way to help define the documents proposed herein.

Changes to MAiD criteria and safeguards will continue to challenge the roles of MCCs. For example, opening access to MAiD for individuals without a reasonably foreseeable natural death (non-RFND) in 2021 has increased administrative and coordination burdens for MCCs, highlighted the need for coordinators to complete fair and equitable triaging of new referrals where there are not enough assessors to meet the demand, and challenged coordinators to support more complex patients in navigating a system crippled by the COVID-19 pandemic. The coordination role is expected to continue to change and evolve over time and additional resources and standards may be required to support the core commitments of MCCs.

This paper has some limitations. It was written by two case coordinators working in an institutional setting with strong leadership, funding and team support, which is not common for all MCCs across Canada. By reaching out to stake holders for feedback on the drafts of these documents, we attempted to correct these biases in order to develop guidance documents that are relevant beyond our context. We acknowledge that we may not have been able to fully capture the viewpoints of care coordination in community or rural settings, as most respondents to our survey were from urban settings. In addition, MCCs from only three provinces participated in our survey (Quebec, BC and Ontario); these provinces do account for over 80% of all MAiD cases in Canada, but nevertheless, it is not clear how relevant these documents are for MCCs in other provinces.

Conclusion

The purpose of this project was to outline the new role of the MCC in Canada and begin to lay the groundwork for more consistent, ethical and competent practice. In outlining aspects such as core competencies, roles and responsibilities, as well as creating a proposed code of ethics, we have intended to describe and support this emerging practice of MAiD coordination. We have also presented case studies that illustrate the ethical complexity of the MCC role.

Future areas of research about the roles of and responsibilities of MCCs include: differences between local and regionalized MAiD care coordination services; strategies for supporting appropriate access for patients without a reasonably foreseeable natural death including the resources to support this new population; educational and training needs for new MCCs; and options for creating a governing body to oversee MAiD care coordination practice.