Medical Assistance in Dying: Patients',Families',and Health Care Providers' Perspectives on Access and Care Delivery

Abstract

Background:

Medical assistance in dying (MAID) became legal in Canada in 2016. Although the legislation is federal, each province is responsible for establishing quality care.

Objective:

To explore patient, family, and health care provider (HCP) perspectives on MAID access and care delivery and improve regional MAID care delivery.

Design:

Qualitative exploratory.

Setting/Subjects:

We interviewed 5 patients (4 met the legislated MAID criteria and 1 did not), 11 family members (4 spouses, 5 children, 1 sibling, and 1 friend), and 14 HCP (3 physicians, 4 social workers, and 7 nurses) from June to August 2017.

Measurement:

Semistructured interviews, content analysis, and thematic summary.

Results:

Patients, families, and HCPs highlighted access and delivery concerns regarding program sustainability, care pathway ambiguity, lack of support for care choices, institutional conscientious objection (CO), navigating care in institutions with a CO, and postdeath documentation. Patients and families expressed additional concerns regarding lack of ability to provide advanced MAID consent, and the requirement of independent witnesses on MAID request forms and consent immediately before MAID administration. HCPs were additionally uncertain about professional roles and responsibilities. Ten recommendations to improve regional MAID care and the resultant practice change are presented.

Conclusion:

Quality improvement (QI) processes are essential to devise an accessible dignified patient- and family-centered MAID program. Ensuring patient and family perspectives are integrated into QI initiatives will assist programs in ensuring the needs of all are considered in structuring and staffing a program that is accessible, easy to navigate, and provides dignified end-of-life care in supportive and respectful work environments.

Introduction

On February 2015 the Supreme Court of Canada struck down the prohibition against assisting a person to commit suicide and in June 2016, the Government of Canada passed Bill C-14 specifying that physicians and nurse practitioners may provide medical assistance in dying (MAID) to eligible patients. Eligible patients must (1) qualify for Canadian health services, (2) be at least ≥18 years and mentally competent, (3) have a grievous and irremediable medical condition, (4) make a voluntary request without outside influence, and (5) provide informed consent.¹ Bill C-14 outlines safeguards to balance individual autonomy with the protection of the vulnerable. Safeguards include the requirement that two independent individuals (Table 1) to witness the formal request form, the patient's right to withdraw a request at any time, that two independent assessors confirm patient eligibility, a 10-day reflection period between written request and provision (unless both assessors believe that there is risk of imminent death or loss of capacity), and confirmed patient consent immediately preceding provision. Health care provider (HCP) conscientious objection (CO) is respected in the legislation, and in regulatory association position statements.^2–4 Some posit CO could extend to health care institutions.⁵ Health care institutions associated with religious groups in Canada continue to maintain some autonomy over their own policies, although the right to do so has been increasingly challenged in a publicly funded health care system.⁶ Although legislation does not dictate MAID must be accessible in all health facilities, it is recommended that care institutions either allow MAID within the institution or safely transfer the patient to an alternative place of care.⁷

Table 1.

Independent Witness Criteria

Any person who is at least 18 years of age and who understands the nature of the request for medical assistance in dying may act as an independent witness, except if they

• know or believe that they are a beneficiary under the will of the person making the request, or a recipient, in any other way, of a financial or other material benefit resulting from that person's death;

• are an owner or operator of any health care facility at which the person making the request is being treated or any facility in which that person resides;

• are directly involved in providing health care services to the person making the request; or

• directly provide personal care to the person making the request.

Government of Canada.¹

Health care delivery in Canada is administered by provinces and territories, resulting in regionally different MAID processes. However, all provinces and territories must follow the Canada Health Act, which outlines the criteria for health services delivery, including public administration, comprehensiveness, universality, portability, and accessibly.⁸ Accessibility is “reasonable access to insured hospital, medical and surgical-dental services on uniform terms and conditions, unprecluded or unimpeded, either directly or indirectly, by charges… or other means.”^9(p.10) Inconsistent provincial processes related to MAID program coordination, the involvement of provincial or territorial coroners/medical examiners, and completion of the medical certificate of death are noted.¹⁰

Access to and delivery of MAID may be impacted by CO¹¹ and by geographic variations in care delivery throughout Canada. Those with life-limiting conditions are particularly vulnerable to differential access to, and provision of health care.¹² Patient- and family-centered care is one of the domains of health care quality,¹³ and it is crucial that the perspectives of the care recipients, supplemented by the perspectives of HCPs, are considered in quality care delivery. Emerging program data must be reviewed during formative program development to support regional quality improvement (QI) monitoring. Equally salient, these learnings may inform important national considerations as Canadian law is debated and may be used by international jurisdictions. The goal of this qualitative QI project is to explore patient, family, and HCP perspectives on MAID care access and delivery, and provide recommendations to improve a regional MAID program.

Practice context

Data were collected in a Saskatchewan regional health authority from June to August 2017. A regional MAID policy and provincial guidelines for registered nurses¹⁴ and nurse practitioners,¹⁵ practice guidelines for pharmacists,¹⁶ and a physician practice policy² supported MAID practice. The most responsible HCP commonly referred potential patients to physician staff affairs, where a core group of practitioners predominantly conducted MAID assessments and provisions. Patients, families, and MAID practitioners engaged in extensive discussion to ascertain wishes and eligibility before patients were given the formal written request form. After written request, the patient underwent two independent assessments to determine eligibility. If both practitioners concurred, a discussion followed about the patient, family, and practitioner's wishes and constraints. After the 10-day reflection period, the patient could proceed to MAID provision, although many patients typically chose to defer provision until their quality of life became unacceptable. Local protocols were established for practitioner administered intravenous MAID, but not for patient self-administration. MAID provisions were contrary to health care institutions with a CO, so patients were transferred to alternative care sites. Postdeath provincial requirements required the involvement of the Office of the Chief Coroner, with the manner of death recorded as suicide.

Ethical considerations

The regional health authority ethics committee and the MAID practitioners met to develop a QI process, and an ethics proposal was submitted to the university ethics committee. Collaborative meetings followed, which resulted in the project being considered exempt as a QI project (BEH 17-134).

Methodology

An interpretive description (ID) approach was employed as it accounted for both the constructed and contextual nature of human experiences,¹⁷ and focused on patterns and themes to inform clinical practice.^18,19 Consistent with ID, project members were grounded in their respective disciplines with programs of research and practice in end-of-life care. Access was conceptualized as having four components: (1) Was the service available and in adequate supply? (2) Could the service be utilized and what were the barriers? (3) Were the services relevant and effective? and (4) Was there equity of access?²⁰

Methods

Patient and family care perspectives were key QI indicators based on a review of the published literature and regional emphasis on patient- and family-centered care.²¹ Three considerations guided sampling: (1) a desire to keep patients' and families' perspectives at the forefront, (2) inclusion of participants with diverse MAID involvement, and (3) inclusion of sufficient participants to address the project goal. We aimed to recruit 6 to 10 patients, 6 to 10 family members of patients, and 10 to 15 HCPs (physicians, social workers, and nurses).

MAID practitioners involved in the early stages of the MAID process recognized the importance of patient and family perspectives in care access and delivery and routinely asked permission of patients and families to be approached as part of a QI process. Potential participants, who consented to be contacted regarding QI feedback, were approached by a medical student to ascertain their degree of participation interest. If interested, the participant was provided the project information and consent details. Before the interview, written consent was obtained, and interviews occurred in a confidential comfortable mutually agreeable location. Guided by a semistructured interview guide (Appendix A1), two students conducted the interviews. Interviews were audio recorded and transcribed. A research support team supported subsequent data analysis.

Data analysis

Two project members with qualitative analysis familiarized themselves with the transcripts concerning the concept of access while being open to emerging patterns and themes. Conventional content analysis²² was employed, and an open-coding iterative approach was used. The textual codes were formulated, sorted, linked, and finally thematically summarized with the support of NVivo12. A codebook defined and delineated the resultant categories²³ with exemplar quotes.

Results

Thirty interviews were conducted and included 5 patients, 11 family members, and 14 HCPs (Tables 2–4). Data represented 26 unique MAID cases with some of the participants from the same family unit (i.e., a patient and a spouse, or a spouse and child of a MAID recipient). Access and care delivery concerns were largely similar across all participants with some unique concerns noted by the patient/family and HCP groups. The findings are visually represented in Figure 1, and the exemplar quotations are in Table 5.

FIG. 1.

Conceptualization of access and delivery concerns.

Table 2.

Patient Participant Profiles

	N = 5
Gender
Female	3
Male	2
Age range, years
50–59	1
60–69	2
≥70	2
Ethnicity
Caucasian	5
Primary residence^a
Large population center	3
Medium population center	0
Small population center	2
MAID involvement
Assessed and not eligible for MAID	1
Assessed and eligible for MAID and had a MAID death	3
Assessed and eligible for MAID and had proceeded a nonassisted death	1
Precipitating medical circumstance^b
Cancer related	1
Neurodegenerative	3
Circulatory/respiratory	0
Other	0
N/A^c	1
Location of eventual death
Hospital	2
Patient's home	2
Long-term care facility or nursing home	0
Hospice or other	0
N/A^c	1

According to Statistics Canada, a large urban center consists of a population ≥100,000, a medium population center consists of 30,000–99,000, and a small population center consists of 1000–29,000.

Precipitating medical circumstance groupings are in alignment with the Government of Canada reports on MAID.

Patient deemed noneligible for MAID.

Table 3.

Family Member Participant Profiles (and Information Regarding Their Patient Family Member)

	N = 11
Family member's gender
Female	9
Male	2
Family member's ethnicity
Caucasian	11
Family member's age range (years)
40–49	2
50–59	3
60–69	2
≥70	4
Family member's relationship to patient
Spouse	4
Child	5
Sibling	1
Friend	1
Patient's gender
Female	4
Male	7
Patient's age range (years)
50–59	2
60–69	2
70–79	2
≥80	5
Patient's ethnicity
Caucasian	11
Patient's primary residence^a
Large population center	10
Medium population center	0
Small population center	1
Patient's MAID involvement
Assessed and eligible for MAID and had an assisted death	7
Assessed and eligible for MAID but had not yet had an assisted death	1
Assessed and not eligible for MAID	1
Assessed and eligible for MAID, proceeded to a nonassisted death	2
Patient choice	1
Patient lost capacity before MAID provision	1
Patient's precipitating medical circumstance^b
Cancer related	2
Neurodegenerative	4
Circulatory/respiratory	3
Other	1
N/A^c	1
Patient's location of death or eventual death
Hospital	5
Patients who transferred from one place of care to another preceding MAID	2
Patients who did not have to transfer from one place of care to another preceding MAID	3
Patient's home	5
Long-term care facility or nursing home	0
Hospice or other	0
N/A^c	1

According to Statistics Canada, a large urban center consists of a population of ≥100,000, a medium population center consists of 30,000–99,000, and a small population center consists of 1000–29,000.

Precipitating medical circumstance groupings are in alignment with the Government of Canada reports on MAID.

Patient deemed noneligible for MAID.

Table 4.

Health Care Provider Participant Profiles

	N = 14
Gender
Female	11
Male	3
Age range, years
40–49	6
50–59	5
≥60	3
Professional group
Medicine	3
Family medicine practitioners	2
Medical specialist practitioner	1
Social work	4
Acute care social worker	3
Community based social worker	1
Hospital nurses	7
Registered nurse	6
Licensed practical nurse	1
Involvement with MAID
Provided care the day of MAID	5
Provided MAID	1
Provided supportive care	4
Provided care in advance of MAID	6
Policy development and staff support	3
Geographic location^a
Large population center	13
Medium population center	0
Small population center	1

Table 5.

Exemplar Quotes

Limiting legal stipulations	“I think that you know, if you, if you make those decisions [for MAID] when you are capable of making them and they're legal decisions then they should be honored.” (Family member. Husband assessed and approved for MAID and present during interview. Interview 5)“I'm terrified that I am going to fall or have a stroke or something. Then they [the MAID practitioner] come to say, to me, on Sunday [day of my chosen death], do you still want to do this? That I can't answer them…but the law is, I have to be able to say ‘no I don't want this’ or ‘yes I do.’ And that's wrong. They know what I want.” (Patient. Assessed and approved for MAID. Interview 1)“[A challenge for] our family was finding a witness, a witness that wasn't a relative, but had known him for a period of time. Because it was quite a new thing …we kept everything really quiet.” (Family member. Father received MAID. Interview 12)
Sustainability	“There will need to be more people other than those two [current MAID practitioners] … It needs to be expanded. Only if you can find two people as good as them.” (Patient. Assessed and approved for MAID. Interview 1)“The commitment of doctor [MAID practitioner] and [MAID Practitioner] is uh, is what's driving this. They are very committed and both do an excellent job of what they do. So, I think my concern with that is uh, that they are going to burn out.” (HCP. Interview 3)
Pathway ambiguity	“I brought it [the request for MAID assessment] forward almost three different times before he [the family physician] actually gave me the name of somebody to contact…the only reason the ball did get rolling was because I did end up going to the CEO of the nursing home … and now [we] learned that [the family] doctor was against it, so that's why we are thinking things didn't progress… His comments were, well now you've read the letter [from the MAID practitioner], so you know I've passed the dirty work on… he called…the MAID team doing the dirty job on more than one occasion.” (Family member. Mother was assessed, but not approved for MAID. Interview 15)“I think that all doctors should have [to]…know where to get started with this. Just like my [family] doctor in [city] didn't have any idea where to start.” (Patient. Assessed and approved for MAID. Interview 7)“Lack of charting in the patient chart [is a significant problem]. That's how we keep informed. So, when we have something that is so significant for our patient that is left out, it leads to chaos and confusion. So, when the family wants me to be there and I have no information about when it's happening. I have concerns about the secrecy around the process that does create practical challenges… when we make something secretive and don't allow people to share accurate information, it attaches stigma. It makes the team feel like there is something wrong with it, that we shouldn't be a part of it. I really think the secret relates to stigma, and I have a huge concern with that. I respect that physicians want to maintain own privacy and confidentiality but there needs to be more information sharing.” (HCP. Interview 7)
Lack of support for care choices	“I guess he [family doctor] asked her [MAID patient] why. Why do you want to do this? And she just looked at him and said, ‘don't I have the right to quit?’” (Family member. Sister received MAID. Interview 11)
Lack of support for care choices	“One of my experiences related to this is that we don't know who has a CO [conscientious objection] and who does not. So that in itself makes it somewhat challenging as we move forward. Nobody takes responsibility for asking staff and then with scheduling there can be problems. I would be concerned about the communication piece of the staff. Are they given adequate opportunity to disengage from the process? To my knowledge I don't think the asking is really going on. I think potentially there is a lot of pressure for some staff. Who would they tell? Who looks after it?” (HCP. Interview 7)
Institutional CO	“But if you're in a place like [city] where you have one hospital which has a religious foundation… then you might have had a problem getting access, and I do not regard it as morally justifiable. Let's put it this way, there are limits [to MAID] and the limits are set by secular beliefs, not by religious beliefs.” (Patient. Assessed and approved for MAID. Interview 3)
	“The patient was transferred from [institution with a CO] to [alternative facility] because, [institution with a CO] has said they don't want to participate in MAID. But you think about the patient, they've just made these big decisions, are at the end of their life, and in lots of pain, and then we have to put them through this. And I think they have to stop the pain medication to be able to consent when they get there, and it's just really uncomfortable for them.” (HCP. Interview 11)
	“The transfer [from institution with a CO] to [an alternative facility] itself was fraught with potential for harm to the patient… there was some anxiety about giving a sedative, or anxiolytic, or analgesic to make it comfortable for them and also not impair their ability to give informed consent…And their family had criticisms. It was unfortunate that we withheld the narcotic, but they [the family] all understood the need. They appreciated and understood why we did what we did.” (HCP. Interview 15)
Navigating care in institutions with a CO	“[Asking for MAID information] that was kind of a touchy situation too. It's like who do you talk to when you are in a Catholic facility and you know that they do not support MAID? So how do you go about this? [My] Dad did speak to, in private, with the door closed, he spoke with [family doctor] about it and [family doctor] …said, I myself can't do anything for you, but I will make sure that you are in touch with the people who can.” (Family member. Father received MAID. Interview 12)
	“He [patient] did run into a little bit of trouble with the spiritual care people at [institution with a CO]. I know when he [MAID practitioner] first started coming, he kind of told us, this is really new to him, to everyone, and he said ‘I prefer that you kept my name confidential right now,’ so we were very good about that.” (Family member. Husband received MAID. Interview 13)
	“Some of the staff at [institution with a CO] … [also] worked in other facilities and knew more about it [MAID]… Like he [patient] kind of knew who he could talk to and who he couldn't.” (Family member. Husband received MAID. Interview 13)
Postdeath documentation	“[MAID practitioner] told us from the beginning, that what needed to go on as cause of death on the form is suicide. And so, we don't agree with that, and we would certainly lobby to have that changed.” (Patient. Assessed and approved for MAID. Interview 4)
Postdeath documentation	“Because [patient's] disease was work related, I contacted WCB [Workers' Compensation Board] … I asked, what happens with someone that chooses to do medical assistance in dying, would WCB still pay out. No idea, no clue, had never talked to her legal department about it.” (HCP. Interview 16)
Uncertain roles and responsibilities	“[The patient] knew that's what she wanted and so I got the doctors, and referred, and started the process for her. And our direction isn't super clear- we, as [professional group], aren't supposed to bring it up as I'm told, but we aren't really sure what to do. … is it the doctor who brings it up? Or do they learn about it from media? We don't really know.” (HCP. Interview 11)
	We're involved with the patient, but I don't know how much of it we are allowed to direct. Is it something that nurses can bring up? Or is it the doctors that should bring it up and get other teams involved with MAID and they would give them information to follow up with? (HCP. Interview 6)
	“The [Registered] nurses weren't sure if they were going to have to administer medications.” (HCP. Interview 4)

CO, conscientious objection; HCP, health care provider.

Patient and family concern

Limiting legal stipulations

Participants viewed the safeguards of independent witnessing of the written request and consent before administration as barriers that negatively influenced MAID care. They strongly articulated the need for advanced MAID consent, and, that the requirement of final consent just before MAID provision caused undue stress and anxiety. They were distressed by the need to locate, approach, and share their end-of-life care choices with individuals outside of their immediate circle of support as it forced them to share personal information they otherwise would not have.

Patient, family, and HCP concerns

Sustainability

Participants expressed significant concern about sustainability, noting the limited number of MAID practitioners and the personal impact this emotional time-intensive care area had on MAID practitioners. Participants expressed a need to have additional MAID practitioners who can provide the degree of commitment needed to provide credible and trustworthy MAID programming and ensure that practitioner supports are in place.

Ambiguous care pathway

Participants expressed frustration and confusion regarding the ambiguous care pathway, which significantly impacted access to care to care. Significant challenges were noted in obtaining accurate MAID information, referrals, and delivering the complexities of MAID care. This was compounded by an “air of secrecy,” HCP lack of knowledge regarding care processes, and, on occasion, HCP nonparticipation.

Lack of support for care choices

Participants felt a lack of support for care choices, which manifested in how patients and families perceived and received care. Participants expressed a lack of support for HCPs who objected to MAID and for HCPs who actively choose to participate in care. An environment that did not honor patient, family, and HCP choices was a significant barrier to safe care delivery.

Institutional CO

Participants were concerned that policies in institutions with a CO were negatively impacting care. Given the vulnerable nature of patients, if medications were required to support a comfortable transfer to an alternate care site, this could impact the patient's ability to provide final consent. These practices and policies were seen as an inappropriate barrier to legally available care in a publicly funded health care system.

Navigating care in institutions with a CO

Participants expressed challenges in navigating MAID care in institutions with a CO and were incorporating these considerations into their care conversations. These considerations added a layer of complexity and covertness in ascertaining “who” may be safe to approach when accessing, receiving, and providing care.

Postdeath documentation

Participants were distressed how the manner the death was recorded on the medical certificate of death, and the implications and stigma of the same. In addition, there was uncertainty regarding other death reporting processes (i.e., workplace compensation forms).

HCP concern

Uncertain roles and responsibilities

HCPs were unsure of their care provision responsibilities and were concerned about how this impacted safe and seamless care provision. Confusion regarding communication with patients and families and scopes of practice resulted in disorganized and disjointed care.

Discussion

The challenge of operationalizing Bill C-14 into a clinical practice reality is significant.²⁴ MAID practitioners find working with patients and families in this clinical context rewarding.^25–28 However, consistent with our findings regarding sustainability, challenges have been reported related to levels of stress,²⁸ administrative demands (time, workload, learning curve, isolation, and lack of team support),²⁶ the impact of denying patients who did not qualify for MAID, working with family and friends through grief,²⁵ inadequate compensation for time,²⁹ complex reporting, and logistics and travel required to provide care.³⁰ Resiliency in MAID practitioners and program sustainability is crucial to the ongoing provision of quality clinical care in this area.^28,31

Practitioners must have time to practice relational care,^32,33 have administrative supports, and remuneration that reflects practitioner intensive investment. Social and emotional support³⁴ through group debriefings should be easily accessible and sensitive to the MAID care context. Special consideration should be afforded to those MAID practitioners who work in rural, remote, and single-provider practice settings. A team-based approach to care and collegial support is essential.³⁵ Mentorship may be a means to improve the number of available practitioners while maintaining quality care standards.³⁶ Quality of care must not be compromised during rapid program evolution. Good clinical care must always be at the forefront, and mentorship can demonstrate and emphasize the importance of holistic assessments, understanding of a patient and family story, and utilization of interdisciplinary supports.

Interdisciplinary approaches support patient and family end-of-life care,³⁷ yet known MAID program-related challenges include role ambiguity and lack of collaboration.³⁸ This aligns with our findings of HCPs articulating uncertainty in roles and responsibilities and support for care choices. Conversations regarding care plans, care practices, and documentation must be sensitive but also normalized as MAID is a legally available care option. Incomplete or absent communication and documentation not only risks perpetuating the stigma of care provision, but also may compromise patient safety if care plans, assessments, and communications are not documented and shared with the care team.^39,40 Interdisciplinary education for HCPs should be facilitated,^31,38,41 and knowledge must move beyond understanding legalities and into clinical care realities, including (1) the role and scope of practice of interdisciplinary team members,³⁸ (2) program procedures and care standards,^38,41,42 (3) sensitive and holistic communication with patients and families,^43,44 and (4) respect for care practice choices, including those who object to and those who provide MAID.

There is significant moral diversity in the HCP population.^31,45 Although some HCPs view a referral to a centralized MAID access point as a form of participation, the importance of a MAID referral system has been emphasized.^24,46 It will be important to move beyond policy-level inclusion supporting CO provisions to identifying how the facility and staffing logistics are managed concerning MAID, and how, when, and to whom objection will be communicated to ensure the continuation of safe care. Consideration must be given to the needs of HCPs who choose to participate in MAID. This includes providing safe spaces and the opportunity to acquire skills and confidence in care provision.⁴⁷

The nonparticipation of some institutions in MAID results in care delivery challenges²⁵ and disagreements or strained relationships with colleagues.^25,26,29 Participants highlighted concerns regarding the comfort and safety of the patient during transfer and the use of pain-relieving medications, potentially impacting a patient's ability to provide the final consent. Additional reported concerns about transfers include the lack of bed capacity of the receiving facility to accept the transfer.⁵ Open and respectful dialogue between MAID programs and institutions is essential to support common patient and family end-of-life care standards and outcomes.

The legal MAID landscape continues to evolve, and some believe Bill C-14 should be updated to better meet patient needs better.²⁵ The Council of Canadian Academies issued a report examining the existing evidence in three areas: assisted death advanced requests, requests by mature minors, and assisted death when mental illness is the sole underlying medication condition.⁴⁸ More recently, a provincial court ruled requiring a potential MAID patient's death to be reasonably foreseeable was unconstitutional.⁴⁹ HCPs and program leadership must be aware of the evolving landscape and seek to improve care access within the safeguards of the Bill. Some jurisdictions, in partnership with community advocacy groups,⁵⁰ make use of volunteer witnesses to facilitate written request form completion. Open conversations may augment the patient and family understanding of the care options, alleviate fears and concerns, and improve patient empowerment.³¹ Integrating our QI project findings within the existing body of evidence, we developed recommendations to improve regional MAID access and care delivery. These are as follows:

Facilitate options for access to independent witnesses for patient request forms.

Provide anticipatory guidance to patients, families, and the care team regarding the final consent process, including options for care if there is a risk of loss of capacity.

Mentor new MAID practitioners to support sustained care delivery.

Provide enhanced practice support for existing MAID practitioners.

Devise a clear pathway for those who wish to disengage from MAID care.

Combat care provision secrecy with transparent clinical care communication.

Develop a centralized MAID program access point.

Devise clear guidelines and communication processes for postdeath reporting.

Prioritize patient and family's needs and devise common patient and family end-of-life care standards and outcomes between institutions and programs.

Facilitate ongoing interdisciplinary education for HCPs.

Resultant Change in Practice

In fall 2018, the local organization of MAID assessment and provision had been subsumed by a provincial program that includes a full-time manager (registered nurse), two full-time nurse practitioners, and a part-time medical advisor. Two of the study authors have been extensively involved in the MAID program, and project results have been shared with program and health authority leadership. Project results were also shared at the provincial MAID research group, including representation from professional groups, academic researchers, MAID practitioners, and provincial program administration. Program changes include the provincial Healthline serving as a centralized patient, family, and HCP care access point.⁵¹ Documentation of MAID care assessments, consultations, and care plans are now charted within the existing patient record as it is for all other medical care. The Office of the Chief Coroner has removed the requirement to report MAID deaths as suicides,⁵² with the cause of death now reported as (1) “Drug Toxicity” and (2) the underlying health problem responsible for the MAID provision. Current documentation of information reflects federal government regulations on monitoring and reporting MAID, which were passed in July 2018 to standardize the national reporting process and timelines.⁵³ Within our region, there has been much education for frontline staff regarding roles and scopes of practice, sensitive, holistic communication with patients and families, and respect for care provision and care choices. Experienced MAID practitioners are available to clinically mentor new assessors and providers, particularly those in rural areas. Our team remains committed to QI and will continue to explore patient, family, and HCP experiences in an ongoing and cyclical manner, to ensure that the needs of all are being addressed.

Strengths and limitations

A project's strength is the inclusion of patient and family members' perspectives on care, with rich information received from individuals with various degrees of involvement in the MAID process. Findings may be limited by the project location, which was a large population setting in a single western Canadian province. In the rapidly evolving legal and practice context, the findings may be limited by the study's timing. The model of care delivery in this study may not approximate care delivery models in other locations. Finally, the study was limited by the sample size and the patient, family, and HCP demographics, including the number of participants from large population centers, the lack of sample ethnic diversity, and the number of female participants.

Conclusion

MAID is arguably one of the most substantial legislation-driven changes in health care practice in recent years. Implementation of a QI process, subsequent recommendations, and revisiting care experiences will ensure quality MAID programs for patients, families, and HCPs. Including patient, family, and HCP perspectives in QI initiatives will assist programs in ensuring the needs of all are considered in structuring and staffing a program that is accessible, easy to navigate, and, above all, provides dignified end-of-life care in supportive respectful work environments.

Footnotes

Acknowledgments

We are grateful for the willingness of patients and families to share their journeys with MAID with us and for the participation of the health care providers in the interviews.

Funding Information

No funding was received for this project.

Author Disclosure Statement

J.B., D.G., A.H., J.K., and L.T. do not have any conflicts to disclose. R.W. is the medical advisor to the Provincial MAID program.

References

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