Jocelyn Downie calls for more robust information about medical assistance in dying in Canada in order to help protect all vulnerable patients.

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On October 6, 2017, Health Canada released the 2^nd Interim Report on Medical Assistance in Dying in Canada. It reports on medical assistance in dying between January 1 and June 30, 2017.

There is some good news in the data. People are getting access to medically assisted deaths. Between December 15, 2016 and June 30, 2017 2,149 people who were experiencing enduring and intolerable suffering accessed medically assisted deaths. According to the report, only 0.9% deaths in Canada during the period resulted from medical assistance in dying. Between the release of the 1^st and 2^nd reports, there has been a 46.8% increase in access to medically assisted deaths as providers have become available, access systems have been put in place, and patients have become aware of the option. Care coordination systems are in place in most provinces and territories. Medical assistance in dying is available in various venues (hospitals, long term care facilities, nursing homes, and patients’ homes) and in large urban centres (57.1% and smaller population centres (42.9%).

The profile of medically assisted deaths is as expected, given how Parliament drafted the legislation. The average age is 73, there are slightly more men (53%) than women (47%), and the most common underlying conditions (aside from the 8% of cases in which the underlying medical condition was not reported) are cancer (63%), neurodegenerative conditions (13%) and circulatory/respiratory conditions (17%), and other (7%).

There are, however, some signals in the data that identify issues that require attention.  First, only one case was self-administered. The gold standard drug for self-administration needs to be made available in Canada.

Second, only 4.3% of cases were provided by nurse practitioners. Provincial and territorial regulatory barriers that prevent nurse practitioners from prescribing medical assistance in dying drugs need to be removed.

Third, 9% of cases took place outside hospitals, long term care facilities, nursing homes, and patient’s homes. Provincial and territorial governments need to investigate whether medical assistance in dying is taking place in “other” locations, such as hotels and physician clinics, because publicly-funded faith-based institutions are not allowing medical assistance in dying within their walls.

Fourth, not all provinces and territories have a care coordination system. Patients need a way to be connected to medical and nurse practitioners willing to provide medical assistance in dying.

There are also some significant gaps in the data that prevent us from detecting and resolving deficiencies in the Canadian medical assistance in dying system. There is not yet a federal monitoring system and so the “national data” are the result of a patchwork quilt with holes of provincial and territorial approaches to reporting. What information must be reported and to whom and what happens with the data vary across the country. Furthermore, the only demographic data in the 2^nd Report relates to age and gender. For example, information about race, education, and marital status is missing. There is also no information about reasons for accessing medical assistance in dying.

Further, there is a lack of information about barriers to access. From data on all jurisdictions except Yukon, Nunavut, Northwest Territories, Ontario, and British Columbia, we know that the most common reasons for a patient to be declined access are “loss of competency,” “death not reasonably foreseeable,” and “other.” We don’t know whether the imminent loss of capacity exception to the 10-day waiting period could have been exercised in loss of competency cases. We also don’t know whether the practitioners’ interpretation of “reasonably foreseeable” was correct or overly narrow. We don’t know whether the “other” reasons for declining access were legitimate. Indeed, we don’t know what happened to patients who made requests, weren’t declined, didn’t die before the completion of the assessment, and didn’t receive medical assistance in dying. Data on medical assistance in dying inquiries and requests is also missing for Ontario, British Columbia, Yukon, Nunavut, and Northwest Territories. This means that there’s no way to assess the barriers to access.

The protection of vulnerable persons is a key driver in the collection and reporting on data. What is often overlooked is that vulnerability in the context of medical assistance in dying is a two-sided coin. On the one side are individuals who are vulnerable to coercion or desperation and need protection through eligibility criteria and procedural safeguards. On the other side are individuals who are vulnerable to exclusion from access to medical assistance in dying because of the imposition of the values and beliefs of others upon them or because of providers’ overly narrow interpretation of the legislation. To truly protect the vulnerable, the governments need a clearer picture of both sides of the coin. The 2^nd Interim Report on Medical Assistance in Dying in Canada is a good start, but the 3^rd report needs to be much more robust.

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Jocelyn Downie, SJD, FRSC, FCAHS, is a Professor in the Faculties of Law and Medicine at Dalhousie University. @jgdownie