From the outset of Medical Assistance in Dying (MAiD), and especially where a person’s death is not “reasonably foreseeable” (Track 2 MAiD), concerns have been raised about the potential for socioeconomic disadvantage, ableism and ageism to create pressure on marginalized people to seek assisted dying.
These concerns prompted the development of legal safeguards for MAiD in the context of chronic illness and disability above and beyond those for Track 1. These include: a clear 90 days between the day the first MAiD eligibility assessment begins and the day MAiD is provided; consultation with an expert in the patient’s medical condition; and a requirement that health professionals engage with the person asking for MAiD about “means available to relieve their suffering.”
The Track 2 safeguards appear straightforward. However, in documents produced by federal agencies, the purposes of the safeguards are articulated in quite different ways and carry distinct implications for the roles and responsibilities of health professionals. At this time, in some parts of Ontario health professionals have had to make the very difficult decision to cease or curtail intake to Track 2 MAiD programs due to a lack of funding and infrastructure necessary to undertake assessments and ensure safeguards are met.
Two documents illustrate the difference in emphasis in how the safeguards are conceptualized. In the Charter Statement about Bill C-7 (which created Track 2 MAiD), the 90-day period is framed as allowing the assessor adequate time to determine whether all the eligibility requirements set out in the law are met. The “means available to relieve suffering” safeguards are described as “requirements of informed consent” – the person must be given information about and referrals to services, for example, before assisted death is provided.
On the Department of Justice website, in contrast, the safeguards “seek to address” sources of suffering and vulnerability that may motivate someone to ask for an assisted death. Time and attention are directed to the patient’s desire to die: “sufficient time” should be given, and “sufficient . . . expertise” brought to bear on the request for MAiD itself.
While not necessarily incompatible, the difference in emphasis is significant: In one articulation, health professionals are oriented to the processes of discerning eligibility and ensuring the patient’s informed consent to an assisted death; in the other, health professionals are oriented to exploring and responding to the suffering that led the person to ask for help to die in the first place.
We are currently undertaking a qualitative study with health professionals involved in MAiD assessment, coordination and provision, focusing on how they interpret and enact their roles and responsibilities in the Track 2 context.
The approaches and decisions at the front lines of health and social services have long been subjects of social science research. Front-line workers must have detailed knowledge of regulatory frameworks and eligibility criteria and, in one-on-one interactions, must talk with and respond to particular people in particular circumstances, and make decisions. Many scholars argue that in this process, front-line actors are not merely implementing a policy in a specific situation. Rather, they are translating the policy – making it intelligible and meaningful in their own contexts.
In our study, as participants reflected on their decisions and actions in relation to patients, they sometimes referred to the legislation. They also consistently highlighted their identities as health professionals and the norms and commitments of their professional practice. One participant said she saw herself fulfilling her understanding of the legal safeguards “and also wanting to help him . . . I mean, that’s what we do, right?” Describing a patient in very difficult social circumstances, another participant said she acted as “a family doctor . . . a social worker . . . an advocate” as well as a MAiD assessor. Another drew attention to his and his colleagues’ dual accountabilities: wanting to “do right by the legislation” and to “do right by our patients.”
Our study makes visible a particular translation of Track 2 MAiD safeguards, one animated by professional self-concepts and discourses of empathic communication and active facilitation of care. This more holistic and “upstream” framing of health professionals’ responsibilities to patients – that resonate with the Department of Justice articulation of the safeguards – are rarely visible in public discourse about MAiD, and they merit more attention and support.
In MAiD legislation, the actions health professionals are required to take when a person’s death is “not reasonably foreseeable” include “ensuring that the person has been informed of the means available to relieve their suffering . . . and has been offered consultations with relevant professionals.” The “means” listed in the law include “counselling services, mental health and disability support services, community services and palliative care.” Health professionals must discuss with the person “reasonable and available” means of relieving suffering and “agree with the person that the person has given serious consideration to those means.”
In our study, health professionals described in-depth conversations with patients about their lives and circumstances, and specific potential changes that might make a difference in their suffering and in their desire to die. Their interactions went beyond offering information: they also supported patients to (in the words of one participant) “imagine a different situation” for themselves. The options health professionals suggested were oriented around the relief of suffering, and also around living and coping with suffering. The “means available to relieve suffering” they discussed with patients included services listed in the legislation as well as many informal or less recognized forms of support and intervention.
While giving “serious consideration” is typically understood as a primarily cognitive undertaking, health professionals in our study also spoke in more embodied and experiential terms and offered patients the opportunity to “try something out” (a short-term respite bed, for example) to “experience what life would be” or what “life could look like.”
Jonas-Sébastien Beaudry, Canada Research Chair in Health, Inclusion and Policy at McGill University, argues that the conceptualization of autonomy underpinning Canada’s MAiD policy is of deliberative autonomy, concerned centrally with protecting people’s decisional capacities (that is, focused on capacity, informed consent, freedom from coercion from other individuals, etc.). He points out that the MAiD law “virtually ignores psycho-social factors and contextual dynamics beyond those ensuring the presence of deliberative capacities.”
Yet as our study shows, groups of health professionals involved in responding to MAiD have been paying attention to psycho-social and contextual dynamics. The professionals who participated in our study were alert to the many ways people can feel, and be, trapped and abandoned: living in situations from which they see no way out, or without adequate resources – material, social, emotional – to keep living. They spoke about material barriers to getting needs addressed (distance, cost, wait times, etc.) and emotional and relational barriers: engaging with supports and providers takes energy, trust and hope.
Importantly, the professionals we interviewed affirmed the alignment of their approaches with patient autonomy and with access to MAiD. One participant explained that facilitating access to social and health supports generates vital information for the patient; it is about professionals using “our expertise to help (patients) make an informed decision.” Another described her team “always looking for . . . unmet needs, whether or not they would change the trajectory of somebody’s (MAiD) request.”
At the same time, professionals’ efforts and commitments were sometimes constrained by inadequate resources. A participant described calling several different medical professionals and community service providers to arrange more nursing care for a patient’s terrible leg ulcers. With three home visits a week, the patient’s wounds were open, the bone visible, yet the health professional could not bring about more visits.
In MAiD law, discussion of the “means available to relieve suffering” happens between individual patients and individual health professionals. In the bigger picture, for citizens and communities, the “means available to relieve suffering” is a matter of public policy. In some of the patient situations our study participants described, public services that could have made a difference in a person’s request to die had been available in the region as recently as the year prior to the pandemic but were no longer offered. In his critique of the narrow focus on deliberative autonomy as the basis of MAiD policy, Beaudry advocates social autonomy, which entails “an obligation [on the part of the state] to ensure that the patient’s range of options rise above a threshold that would take into account a number of social determinants of people’s motivations to end their lives.”
In keeping with emerging research and policy guidance, participants in this study highlighted the value of long-term relationships with patients, emphasized the need for adequate time for their complex work, and underlined the importance of collaboration across care sectors. They described the supports required to, for example, gather, review and synthesize health-care records that span decades, contain contradictions, and sometimes lack necessary documentation. They strongly endorsed the involvement in community MAiD programs of “systems navigators”: professionals with extensive knowledge of social and health services and resources, and exceptional relational and advocacy skills to coordinate and facilitate patients’ access to them.
Yet, this infrastructure is not in place in many communities. Without it, the capacity of regional MAiD teams to undertake Track 2 assessments and ensure safeguards are met is being overwhelmed. In our region, program leaders have been forced to make the very difficult decision to cease or curtail intake to Track 2 MAiD programs.
Canadians deserve access to robust and timely responses to their MAiD inquiries. Most important among these are conversations and supports intended to relieve suffering, that may ease or address the person’s desire to die.
MAiD programs, and the broader network of health and social services in which they are embedded, must be better resourced if health professionals are to consistently and meaningfully address sources of suffering that motivate someone to ask for an assisted death, and enact the Track 2 safeguards in alignment with their professional identities and commitments.
Dr. Nick Ogden, Canada’s senior research scientist has given us a multiplier of 13.7 (Ogden/Dumas Feb 2024) to use on whatever Lyme disease (LD) case numbers officials present. From that we can estimate that, since 2009 there have been approximately 271,795 LD cases across Canada. There is consensus that 10%-20% or more patients remain ill and suffer a declining quality of life despite being treated according to highly restrictive, flawed industry preferred guidelines of the private 13,000 member International Diseases Society of America (IDSA) and promoted here by AMMI Canada members who take their direction and owe their loyalty to the IDSA. This could mean that as many a 53,531 Canadians have persistent (PLD) or chronic (CLD) LD. These numbers will only keep escalating unless we allow physicians with training to diagnose and treat complex cases of disseminated Lyme and tick-borne diseases (TBDs) rather than follow a rigid, one-size-fits-all set of guidelines that makes no sense.
Although we hear mostly about mosquito-borne disease, ticks are responsible for 95% of vector -borne diseases in Canada, 82% of which are Lyme. Lyme is a disease of consequence, the infectious disease equivalent of cancer
Guidelines are meant to help patients and assist physicians with their diagnosis and treatment. Guidelines should be free of industry influence. They are not rules or mandates for use by the regulator to investigate and punish physicians. The only purpose of the IDSA LD guidelines is to punish clinicians that don’t follow them. Industry has found that it can control medicine if it can control the guidelines. We need a set of made-in-Canada LD guidelines.
Patients know they should be involved in decision making when choices are available. There are 2 schools of thought about LD with deep divisions. Doctors belonging to the International Lyme and Associated Disease Society (ILADS) listen to their patients and, in a process of shared decision making, diagnose and treat these patients that are otherwise abandoned by the rigid IDSA guidelines that make no allowances for patient preferences or physician skill and judgement. We have less than a handful in Canada the rest have been harassed from practice or forced to sign silencing agreements.
“In medicine nothing is absolute, the science is never settled and patient care needs to be as individualized as the individual.” –L. Marcum
A small percentage of a very big number is still a big number. Many of those patients are in danger of having to leave school of having to drop out of the workforce and go on social assistance and the numbers just keep escalating. Lyme seldom kills outright; as the girl in the award winning documentary “Under Our Skin” says “you just wish you were dead”. The commonest cause of death associated with LD is suicide. Lyme is a disease of consequence that was misclassified as a minor nuisance disease when the insurance industry red-flagged it as being too expensive to treat. We are all being gaslit while politics and medicine have failed us both. Lyme is an invisible stigmatized disease and several suffering patients have requested MAiD for Lyme and TBD infections that are in fact treatable but not with cookie cutter approaches.
“In medicine nothing is absolute, the science is never settled and patient care needs to be as individualized as the individual.” –L. Marcum
Provincial governments have made the situation much worse by allowing pharmacists to diagnose tick bites and administer a double dose of doxycycline for post tickbite prophylaxis. The only thing this dose has been shown to do is to prevent the rash, patients weren’t followed to see if anyone later became ill. A year or more after this questionable procedure new are now getting calls from these patients. They can’t claim Workmen’s Compensation or get treatment in Canada because persistent or chronic LD is not a recognized condition after the insurance industry red-flagged it as being too expensive to treat. They can’t pass the flawed test which is based on obsolete 1960’s technology of antibody response. The single or double dose that prevented the rash also prevented the patient from developing antibodies allowing the Borrelia bacteria to migrate deeper into tissues and organs.
Patients are being disrespected and disbelieved. Several have asked for MAiD and this is a travesty all because the long-term disability insurance industry doesn’t want to underwrite the costs of treatment. Provincial governments and pharmaceutical boards and associations are refusing to do a follow up study. This is a case of supervised neglect or public health malpractice being foisted on an unsuspecting trusting public.
Seems like a very interesting study your team is conducting no question. What exactly is meant in full detail ‘supporting autonomy’ as is mentioned in the paper could very well be open to a debate along the lines of what is beautiful to one person may not be beautiful to another. But we all encounter difficulties with definitions such as these all of the time in our lives of course and there is often no easy answer in such grey areas. Best of luck with the study.