Room for improvement in Ontario’s MAID Care Coordination Service
In May, Ontario’s Ministry of Health created a new Care Coordination Service (CCS) to facilitate access to medical assistance in dying (MAID). As a family physician and MAID provider, I welcomed the announcement with great anticipation – and some anxiety. The new system promised to dramatically expand access to MAID services in Ontario, and now, after two months of operation, it’s worth looking at whether that goal is being met.
MAID has been legal in Canada for just over a year, since Parliament passed Bill C-14. During that time, it is estimated that more than 1,300 Canadians have died with MAID, and many more have expressed interest in the process.
In Ontario, more than 500 people have had medically assisted deaths, which, according to a recent conversation with the coroner’s office, represents about 0.7 percent of total deaths in the province since MAID became legal. About 55 percent of MAID procedures in Ontario have taken place in a hospital, with the rest being performed in a patient’s home or a nursing home.
These numbers indicate that far from being a rare and extreme option, MAID is being embraced by many Canadians, who have shown consistently strong support in polls for having the option. Clinicians involved in providing MAID have anecdotally noted the significant therapeutic value of simply telling a patient that they are eligible to access MAID.
But physicians who object to MAID still have concerns about having to participate in the process, and some have sought to remove any obligation to refer patients to willing physicians. It was their lobbying efforts during discussion of Bill 84, an act that was supposed to tidy up provincial legislation regarding MAID, that likely led to the creation and roll-out of the new Care Coordination Service (CCS).
The CCS is open to both clinicians (doctors and nurse practitioners) and the public, allowing patients to self-refer if they are interested in finding out about MAID as an option for their end-of-life care. Before the debut of the CCS, patients were required to ask a medical professional for help in accessing MAID. Their doctor or NP would initially determine if there was anything that objectively disqualified them from receiving MAID, such as being under 18, not having Canadian health coverage, or having severe dementia. If there were no such concerns, health care providers had two choices: either to perform a full eligibility assessment themselves (and possibly provide MAID as well), or to call the province’s Clinician Referral Service to find a doctor willing to take the patient through the next steps of the MAID process.
While the ostensible aim of the new CCS was to broaden Ontarians’ access to MAID services, some challenges have already become manifest in the few months that the service has been in operation.
First of all, there are only 73 physicians and nurse practitioners taking referrals through the CCS. Of those 73, only about 50 are willing to provide an assisted death; the others have offered to perform one of the two mandatory assessments needed to qualify a person for MAID, but do not actually carry out the procedure or prescribe lethal drugs. (It is worth noting that there are many other clinicians involved in MAID assessment and provision in Ontario – for example, in hospitals – but they have not made themselves available for referrals from the CCS.)
To make matters worse, nurse practitioners who wish to be involved in MAID outside of their usual clinical duties do not receive any extra compensation, and, unlike doctors, have no method of billing the province for their extra work with MAID patients. This is patently unfair and unsustainable for those NPs who are selflessly giving their time and energy to provide MAID service to Ontarians.
Additionally, one of the most populous Local Health Integration Networks (LHINs) in the province — Central West, which encompasses parts of Toronto, Mississauga, Brampton, and a host of smaller communities in central Ontario — has no willing providers on the CCS list, meaning that patients seeking MAID are connected with clinicians who may live and work a significant distance away, and who may not be willing to travel to see a patient with limited mobility at home. This is a major barrier to access, as travelling to visit a patient outside of one’s practice area is not considered an insured service by OHIP. Although some MAID doctors and NPs conduct “virtual assessments” via the Ontario Telemedicine Network, not all patients have easy access to the technology needed for an assessment by videoconference.
Those of us who provide MAID services are finding that the pace of new referrals continues to increase steadily, but with one important caveat: a substantial proportion of referrals are from patients who clearly do not meet the legal criteria for MAID.
At first, the CCS made no consistent effort to prioritize requests for MAID. The details of each case were passed along to the next available MAID provider closest to the patient, and it was up to us to get in touch with the patient or the referring doctor/NP to assess the relative urgency of the situation.
Some examples of patients who self-referred looking for medical assistance in death included a young man with recurrent attacks of gallstones and otherwise good health, who did not meet the criteria of having “intolerable suffering” and a “reasonably foreseeable death.” A woman with antibiotic-resistant bacteria on her skin also made a request, even though the bacteria were not causing any symptoms or threats to her health.
Requests like these clearly reflect an underlying unmet need for medical attention; these patients should be redirected to their primary health care practitioner or, in some cases, to mental health services, not the limited pool of MAID experts who are already struggling to keep up with an ever-increasing case load. In the end, we usually tell people with ineligible requests that they should see their family doctor, and to call back should their circumstances change. We do not usually have any other organized supports available to offer them.
Thankfully, the Care Coordination Service has recently begun to evolve towards a more robust and supportive system. The nurse practitioners who staff the service are reaching out to patients’ family doctors and specialists; they are using their considerable skill and experience to better understand whether callers may be eligible or not. They are actively seeking feedback from MAID providers and meeting regularly to implement suggestions, within the limits of what the Ministry of Health has contracted them to do.
Is there room to further improve the service? Absolutely. Other Canadian health authorities have taken a much more active role in supporting the provision of MAID.
In Manitoba, for example, staff involved with the provincial MAID team gather medical records, organize meetings between doctors and patients, help patients complete the mandatory written request form for MAID, and arrange for volunteers to witness the signing of the form if the patient cannot find appropriate witnesses.
Social workers are available to participate in the assessment process, and to guide loves ones through bereavement. Patients are offered a chance to participate in free sessions of Dignity Therapy, a specialized kind of psychotherapy that has been shown to improve the quality of life of those who are dying. While the population of Ontario may be 10 times that of Manitoba, it is reasonable to expect that the 14 LHINs could implement similar supports on a local level.
Meanwhile, in Alberta, medical staff involved with regional MAID teams reach out to patients’ family physicians or other clinicians involved, and provide whatever education and support is needed for them to be able to guide their patients through the MAID process themselves. This kind of support is crucial, because providing end of life care is a central part of a family doctor’s mandate, and who is better placed to perform this service than someone who has cared for a person for years, if not decades? By way of comparison, in the Netherlands, most cases of assisted dying are performed by GPs, and mostly in patients’ own homes.
Tasking primary care practitioners with the responsibility of providing MAID would also serve to reduce the emotional burden and time constraints placed on the small cadre of MAID “veterans” like me. When I first got involved with the provision of MAID last year, I could never have imagined that so much of my clinical time would be spent on MAID-related matters. Nor do I think it’s healthy for a small group of clinicians to be performing MAID so frequently; it is a process that calls for somber forethought and time to reflect, not rushing from one case to another in a matter of hours or days, which my colleagues and I fear could become a reality if more providers do not get involved.
While it may still be early and rocky days in the evolution of our province’s approach to MAID, we can hopefully look forward to a future where all Ontarians can equitably access end of life care, be it symptom management, MAID, or some combination thereof. Our success in this endeavour will depend on effective and innovative leadership from the provincial government and the LHINs.
In the interim, it is imperative that family physicians, primary care nurse practitioners, and others supporting patients at the end of life become more familiar with MAID and support their patients through the assessment process. There are already excellent tools, such as those issued by the Centre for Effective Practice, that can assist in familiarizing oneself with the basics. Developing local networks of expertise and relationships with knowledgeable providers will also help ensure that we can honour our patients’ wishes if they request to pursue a dignified and peaceful end to their suffering.
Note: Some details about patients’ stories have been changed to protect their confidentiality.
Ed Weiss is a family physician who practices in the west end of Toronto. He is also a Clinical Assistant at the Immunodeficiency Clinic at Toronto General Hospital, and a member of the Physicians’ Advisory Council of Dying with Dignity Canada.