Abstract
Objective To describe clinicians’ experiences with assessing patients making track 2 requests for medical assistance in dying (MAID) and providing MAID to such patients in the first 6 months after Canada amended relevant legislation in March 2021 to expand access to MAID.
Design Online survey with closed and open-ended questions about clinicians’ experiences with individual patients making track 2 MAID requests.
Setting Canada.
Participants Doctors and nurse practitioners who were members of the Canadian Association of MAID Assessors and Providers.
Main outcome measures The most common reasons patients gave for making track 2 MAID requests and the challenges providers identified in doing these assessments.
Results Twenty-three MAID providers submitted information about 54 patients who had made track 2 requests between March 17, 2021 and September 17, 2021. The most common diagnoses were chronic pain syndromes, affecting 28 patients (51.9%), and complex chronic conditions such as myalgic encephalomyelitis or chronic fatigue syndrome, affecting 8 patients (14.8%). The most common challenges providers reported were related to patients having concurrent mental illness, noted in 37 assessments (68.5%). In 8 cases (14.8%), providers faced challenges in finding experts to help with assessments. In 19 cases (35.2%), providers felt patients had not been offered all appropriate and available treatments, and in 9 cases (16.7%) providers encountered difficulties in finding such treatments for patients.
Conclusion Providers of MAID described many challenges in their experiences with patients making track 2 requests, including assessing individuals with concurrent mental illnesses, being uncertain that patients had been offered appropriate treatments prior to seeking MAID, and being unsure whether patients had seriously considered available treatments. Many providers experienced moral distress in attempting to balance patients’ rights with what might be in patients’ best interests. This is different from experiences providers have had with patients making track 1 requests, as most of these patients have end-stage malignancy or organ failure and seldom have unmet health care needs. This information could be used to enhance education and support for clinicians as they help patients with track 2 requests access their right to peaceful deaths.
Canadians across the country have had the right to assisted deaths since the medical assistance in dying (MAID) law received royal assent on June 17, 2016.1 Initially, this meant that a physician or nurse practitioner could prescribe or administer a fatal substance to end the life of someone who requested MAID and who met certain criteria, including that they had a grievous and irremediable condition that caused unbearable suffering, that they had the capacity to provide consent, and that their natural death was reasonably foreseeable.1 After 5 years and more than 21,000 assisted deaths in Canada, the law was amended on March 17, 2021, so that people who did not have a reasonably foreseeable natural death could now be eligible for MAID (through what are called track 2 requests).1,2
This amendment was a response to a constitutional court challenge in which 2 people with disabilities argued that they should have the right to MAID. The court ruled that the reasonably foreseeable natural death criterion violates section 7 of the Canadian Charter of Rights and Freedoms, which protects against deprivations of life, liberty, and security of the person, and section 15 of the Charter, which guarantees the right to equal protection and equal benefit of the law without discrimination.3 This amended law temporarily extended the exclusion of people whose sole underlying conditions fall under the umbrella of mental illness until March 17, 2024, to allow provinces and territories time to prepare for such cases and to allow time for key resources to be developed for assessors and providers.1 Safeguards for individuals eligible for MAID using track 2 requests include that there is a 90-day assessment period, that the person has “seriously considered” reasonable means of alleviating their suffering, and that assessors either have expertise in the condition causing suffering or consult someone with that expertise.4
This is an important issue for family physicians given that 68.1% of cases of MAID in Canada in 2020 were administered by family physicians and that patients with chronic illnesses constitute a large part of family practice caseloads.2 Provision of MAID specifically for patients with chronic illness is a new area of medical practice, and assessors and providers need to know how to provide the best care possible for patients. As of September 17, 2021, Canadian practitioners had 6 months’ experience with the newly amended law, so we set out to understand what challenges providers had experienced. The Canadian Association of MAID Assessors and Providers (CAMAP) is a national organization of doctors and nurse practitioners who provide assisted dying. The purpose of this study was to gain insight to inform better education for CAMAP members and to be able to provide better advice to policymakers on this matter. We collected information from provider members of CAMAP about their experiences with patients making track 2 requests in the first 6 months after the amended legislation had been passed.
METHODS
We sent emails to CAMAP members in October 2021 and asked them to use an online form to submit information about their experiences with patients making track 2 requests for MAID between March 17, 2021, and September 17, 2021. These emails were sent by the CAMAP administrator and repeated twice. We chose to recruit only through CAMAP because we knew from previous work that members include providers who handle the most cases of MAID.5-7 Also, CAMAP members have all been screened, so we could be certain they were Canadian MAID providers.
Unique identifiers were created for each patient case that providers entered into the online form, and we asked providers to exclude cases in which they did an assessment but expected someone else to be the provider. This was to avoid duplicates since we had no other identifiers for assessments. Cases could not be linked back to particular providers or locations.
We also collected demographic information about clinicians separate from their patients’ information so that patients and clinicians were not connected in the database. This included the province in which they practise, their MAID experience, and whether they are physicians or nurse practitioners (Appendix 1, available from CFPlus*). Patient data collected included age category and diagnoses, but most questions were about challenges providers experienced in providing care for these patients (Appendix 2, available from CFPlus*).
Data from the forms were exported to a data file (SPSS, version 27) for analysis. Descriptive analyses were performed on the quantitative data to determine the main challenges providers experienced in assessing patients with track 2 requests and providing MAID to those who qualified. Both authors read all the comments and chose those that best captured the information to include in this report.
RESULTS
Twenty-three MAID providers submitted information about 54 patients with track 2 assessments (including 21 patients who received MAID) during the 6-month period. These providers included 2 nurse practitioners and 21 physicians who practised in 6 Canadian provinces and 1 territory. They were mostly experienced providers who had assessed a total of 112 patients making track 2 requests and had provided MAID for 33 of these patients. Of the 23 participants, 8 had each provided MAID for more than 100 patients (under track 1 and 2 eligibility) since 2016.
Of the 54 patients assessed, 8 (14.8%) were younger than 30 years old, 22 (40.7%) were between 30 and 59 years old, 21 (38.9%) were between 60 and 79 years old, and 3 (5.6%) were 80 or older. A total of 15 (27.8%) identified as male, 35 (64.8%) as female, and 4 (7.4%) as trans female. The most common diagnoses were chronic pain syndromes, affecting 28 patients (51.9%), which included fibromyalgia, central sensitization syndrome, and chronic neuropathic pain. Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), occurred in 8 patients (14.8%). Other neurologic diagnoses included traumatic brain injury, Parkinson disease, and multiple sclerosis; 1 person had tetraplegia. Many had multiple diagnoses.
Providers reported that symptoms such as pain (47 patients, 87.0%) and loss of ability to do enjoyable or meaningful things (47 patients, 87.0%) were the most common reasons patients gave for requesting MAID (Table 1).
Reasons patients gave for making track 2 MAID requests: N=54.
The most common challenges providers reported were related to concurrent mental illness in 37 patients (68.5%); part of this involved challenges in assessing capacity for 14 (25.9%) (Table 2). Comments from providers included the following:
Originally somatic delusions were impacting capacity, but this improved with a change of antipsychotic [medication].
Personality disorder very present and make patient interactions challenging.
Anxiety seemed to be driving many reasons for refusing interventions that may have been helpful, so capacity to refuse those interventions was in question for me.
I worried about his depression.
By the time I assessed her, her mental illness was under excellent control and not contributing to her request for MAID. This had been an issue with a previous assessor who had declined eligibility on the basis of lack of capacity due in part to mental distress.
Challenges providers encountered in assessing patients with track 2 MAID requests: N=54.
Providers believed that 19 patients (35.2%) had not been offered all appropriate and available treatments for their conditions prior to submitting MAID requests, and providers faced challenges in finding such treatment for 9 patients (16.7%):
During COVID many services and treatments are not available, or there are very long waiting periods.
Her main symptomatology related to [her MAID] request was pain. Closest chronic pain clinic or specialist is 1.5 hours away and patient did not drive.
For 18 patients (33.3%), providers indicated that patients’ vulnerability and social determinants of health posed challenges:
This patient had multiple social issues that made her vulnerable. Her health could have been so much better if she had a place to live that was affordable [and] safe and had facilities to cook. Also, she did not have adequate food.
He is Indigenous and I worried that his experience of systemic racism had interfered with his ability to accept treatment.
Patient was experiencing isolation with COVID and loss of husband; initial difficulty discerning … [whether patient was] coping with loss [or] grief versus informed wish for MAID due to pain.
For 12 patients (22.2%) providers had difficulty assessing whether patients had “seriously considered” appropriate treatments4:
She presented already certain about wanting MAID so was not willing to entertain other options (new medications, infusions, therapy, etc). She was not receptive to counselling. She was adamant the only thing she would consider is MAID.
For 8 patients (14.8%), providers described challenges in finding someone with expertise to help with the assessment:
I needed a psychiatrist, but this meant the patient had to travel [to receive such care].
There was 1 [specialist] in [city] and they would not see her.
Specialist did not answer many requests to call.
Three of the 54 patients (5.6%) were deemed ineligible for MAID and assessments were not completed for 5 patients. Reasons patients were deemed ineligible for MAID included lack of capacity, not having a “grievous and irremediable condition,” and not being in an advanced state of decline in capability.4
Eight providers offered general comments about their experiences and some suggestions:
These [patients’ cases] are extremely complicated. Their cases should be reviewed by a multidisciplinary team to learn early if they are or [are] not eligible under track 2. The team needs a dedicated office, support administrative personnel, a smart competent social worker, [and] dedicated physicians and nurses.
Many young patients, many with severe comorbid mental illness; physical illness acts as a “gateway” under current law to allow MAID where mental illness is the true reason for request.
Enormous amount of time associated with assessing these patients.
It is a sufficient nightmare of challenges that it is unlikely I will participate in many more [cases], if any.
Providers were not asked specifically for positive comments, but 1 provider said they were “delighted to be able to help [the patient].” While providers were not asked whether they were willing to continue doing assessments and providing MAID for patients making track 2 requests, 2 said they were not.
DISCUSSION
Survey respondents provided information about their experiences with 54 patients making track 2 requests in the first 6 months after the amended law was passed. The most common diagnoses patients had were chronic pain syndromes. The challenges providers reported most frequently were assessing patients who had concurrent mental illness, who had not yet been offered appropriate treatment, or for whom social determinants of health had influenced their requests for MAID.
The applicants in the court decision that led to the amended law were Jean Truchon, who had had spastic cerebral palsy with triplegia since birth, and Nicole Gladu, who had lived with disability caused by poliomyelitis for decades.8 In our sample of 54 patient assessments, there was only 1 person with long-standing physical disability caused by tetraplegia. Most patients had chronic pain syndromes or a complex chronic condition (ME or CFS). Many had multiple diagnoses, including concurrent mental illnesses. This contributed to the challenges providers encountered and the amount of time required to do these assessments. Many respondents indicated they were not prepared for the amount of time each case would entail.
Family doctors often see patients with chronic pain, and the prevalence of clinically significant chronic pain is approximately 23% worldwide.9,10 Transition from acute to chronic pain involves distinct pathophysiologic changes in the peripheral and central nervous system.11 Chronic fatigue is seen with ME or CFS and with many postinfection syndromes, such as chronic Lyme disease and long COVID syndrome, with the prevalence of ME or CFS estimated at approximately 1.4% of the Canadian population.12-14 These pain and fatigue syndromes are difficult to treat and multidisciplinary clinics specializing in them are not easily accessible due to cost and long wait lists. This adds to the dilemma that MAID assessors and providers face in assessing whether a patient has seriously considered reasonable treatments to alleviate their suffering. Also, we are unsure how these patients’ MAID requests affected their regular family doctors, as we did not specifically include them in this study.
In the Truchon v Canada decision, Justice Christine Baudouin wrote
the Court finds that, for a doctor working in the area of medical assistance in dying, a vulnerable person should be defined as a person who is incapable of consenting, who depends on others to make decisions regarding his or her care, or who may be the victim of pressure or abuse.15
For 33.3% of patients in our study, providers found assessing vulnerability a challenge, but they discussed vulnerability in terms of social disadvantage (eg, poor housing, lack of transport, financial challenges), systemic racism, and loneliness—not in terms of pressure or abuse. Thus, concepts of vulnerability vary and need to be better defined.
Many comments from providers suggested that they sometimes struggled with being certain that patients had been offered the best treatments, that any rejection of treatment was rational and not related to concurrent mental illness, and that patients’ conditions were truly “irremediable.” This struggle can be interpreted using an ethical framework, as providers were balancing respect for autonomy with doing no harm in the context of the social determinants of health, patient vulnerability, and unavailability of certain treatments.
This contrasts with experiences of MAID assessors and providers reported in previous studies involving patients with track 1 MAID requests, where finding this balance seemed less complex and caused providers less distress.7,16 Policy-makers must be made aware that MAID assessors and providers will need support to deal with the complexity of track 2 requests. This will require well-funded MAID coordination centres with access to social workers, psychiatrists, and other specialists. Family doctors who are not MAID providers may also experience similar challenges as they try to ensure that patients making track 2 requests have had access to appropriate treatments.
Limitations
Our study sample was limited to only 23 providers who gave information about 54 patients making track 2 requests in the first 6 months after the MAID law was amended. We collected data only from brief online surveys and recruited from the CAMAP membership. We focused on challenges providers had encountered and did not specifically ask about positive aspects of this legal amendment since our aim was to inform the development of appropriate training and support. Future research should use interviews to obtain more in-depth information and should explore experiences beyond the first 6 months. It will be important to ask about positive aspects as well as how other aspects of the amended law, such as the 90-day waiting period, changed practices. Future research should also explore the perspectives of family doctors who are not MAID assessors or providers to understand their experiences with patients who have chronic illnesses and who request MAID.
Conclusion
This report of early experiences with MAID for people whose natural deaths were not reasonably foreseeable provides insight into topics on which additional teaching and support would benefit assessors. The challenges they experienced included coping with concurrent mental illnesses and having difficulty being sure the patients had been offered the best treatments and had seriously considered available treatments. Nonetheless, respondents worked to balance the ethical imperatives of respecting patients’ autonomy with not causing harm. This information may help educators teach learners about MAID and inform policy-makers’ efforts to support clinicians in assisting patients with track 2 MAID requests.
Notes
Editor’s key points
▸ In the first 6 months after the medical assistance in dying (MAID) law in Canada was expanded to include track 2 requests, assessors and providers faced numerous challenges, including appropriately assessing patients with concurrent mental illness (68.5% of patients).
▸ The most common reasons patients gave for making track 2 requests for MAID were symptoms such as pain and weakness (87.0%) and loss of the ability to do meaningful and enjoyable things (87.0%). More than half of patients cited loss of autonomy (59.3%) or mental distress (57.4%) as reasons.
▸ Assessors and providers believed that 35.2% of patients had not been offered all appropriate and available treatments for their conditions before submitting track 2 requests for MAID.
▸ Results from this survey may help educators identify learning needs and inform policy-makers’ efforts to support clinicians in assisting patients with track 2 requests for MAID.
Points de repère du rédacteur
▸ Durant les 6 premiers mois suivant l’élargissement de la Loi canadienne sur l’aide médicale à mourir pour inclure les demandes du volet 2, les évaluateurs et les prestataires ont été confrontés à de nombreux défis, dont celui d’évaluer de manière appropriée les patients souffrant d’une maladie mentale concomitante (68,5 % des patients).
▸ Les raisons les plus courantes de présenter une demande d’aide médicale à mourir (AMM) de la voie 2 qu’ont mentionnées les patients étaient des symptômes comme la douleur et la faiblesse (87,0 %), et la perte de la capacité de faire des choses significatives et agréables (87,0 %). Plus de la moitié des patients ont évoqué comme motif la perte d’autonomie (59,3 %) ou la détresse mentale (57,4 %).
▸ Les évaluateurs et les prestataires étaient d’avis que des traitements appropriés et accessibles pour leurs problèmes n’avaient pas été offerts à 35,2 % des patients avant qu’ils présentent leur demande d’AMM en vertu du volet 2.
▸ Les résultats de ce sondage peuvent aider les enseignants à déterminer les besoins d’apprentissage et à éclairer les efforts des décideurs pour soutenir les cliniciens qui assistent les patients dans leur demande d’AMM du volet 2.
Footnotes
↵* Appendices 1 and 2 are available from https://www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.
Contributors
Both authors of this paper have directly participated in the planning, execution, or analysis of the study; both have read and approved the final submitted version.
Competing interests
None declared
This article has been peer reviewed.
Cet article a fait l’objet d’une révision par des pairs.
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