Why Must We Monitor "Medical Assistance in Dying"
There can be little doubt that some people will ask for Medical Assistance in Dying (MAiD) because they are experiencing vulnerability in a way that makes it appear to them that death is preferred over living. This places an enormous responsibility on health care practitioners. Under the law allowing the practice of MAiD in Canada, practitioners must come to understand why their patient is asking to die. They must decide:
- Is this patient asking for MAiD because their medical condition is causing them enduring suffering they find intolerable and there is no way to relieve it? or
- Is this patient asking to die because other things in their life are causing them to suffer so terribly? For example, is the patient vulnerable because:
- family members are no longer able to support them;
- they fear being left by society to fend for themselves without adequate supports
- they have given up trying to get the disability supports and personal care they need;
- they are living and being cared for in a facility but are treated with such disrespect that they have lost hope of ever being able to live with dignity; or,
- the anguish and insecurity of living in poverty, perhaps compounded by racism or ableism, make living in their circumstances no longer worth the fight.
So much hangs in the balance of this important decision that, if acted upon, is irreversible:
- Will a person be lawfully assisted to die?
- Will a person get the assistance they deserve to live?
- Will a practitioner end up assisting in a suicide, instead of helping to relieve a patient’s suffering?
If the latter happens, a crime is potentially committed and society has failed to protect a person’s right to live, to be protected, and to have their basic needs met.
We need a system for monitoring MAiD to:
- support health practitioners to make the right decisions about who gets access;
- recognize inappropriate practices and decisions, in light of the dire consequences of errors;
- help the public understand who asks for and dies under MAiD, and why;
- ensure full transparency and build public trust in MAiD; and
- help governments continuously improve the system.
Helping Practitioners Decide Who Gets Access
The Monitoring system can help practitioners decide who should receive access to MAiD by requiring them to report on how they performed their roles in responding to each request for MAiD. The law describes four main roles that practitioners must play:
- Practitioners must make sure that a person who requests MAiD is doing so voluntarily, and understands what they are asking for. They must make sure the person is not asking to die because of pressure from others; or for reasons unrelated to their medical condition.
- Practitioners must make sure that a person is actually dying, and that the reason they are asking for MAiD is because their medical condition is causing them enduring suffering that they find intolerable.
- Practitioners must take special care to give equal value to every person’s life, and especially to make sure that they do not view the lives of people who are elderly, ill or disabled as less worthy of the right to live.
Provide other options
- Practitioners must understand the patient’s life and living conditions, consider their unmet needs that may cause suffering, and take whatever steps they can to provide other options, including palliative care.
The Monitoring system must be designed to ask health practitioners specific questions about how they carried out these roles for each person who asks for MAiD.
Helping the Public Understand Who Asks, Who Dies, and Why
The public needs to know how the MAiD system is working, so that we can hold governments and providers accountable, according to the law’s objectives of protecting autonomy and keeping people safe from harm. For this reason, we need to have fully transparent, accessible and publicly available information and reports about:
- Who is asking for MAiD and who is receiving it? – This requires publicly reported information, within the bounds of privacy and confidentiality, about patients’ social and economic status, their living conditions and circumstances, and their ethno-racial-cultural identity. We need to hear from practitioners, and we also need to hear from patients themselves so that we can better understand the personal experiences of participants. We need to hear the voices of those asking for and dying under MAiD. We also need to learn more about the experiences of people who consider this option but do not go through with it by their own choice, or who are denied access to it.
- Why are they requesting MAiD? – We need to hear from MAiD practitioners and members of the patient’s primary health care team, as well as from patients themselves about why they are asking to die. What causes them to suffer? What alternative options are available to relieve their suffering, at any point in time, in different parts of the country? How has consideration or availability of options influenced their decisions?
Helping Governments Continuously Improve the System
If governments are to be able to address gaps in the system or uncertainties about MAiD criteria or practitioner responsibilities, and if they are to take active and appropriate measures to secure equal respect for elderly, ill and disabled Canadians, then the monitoring system must be designed to provide the needed information. It must:
- Provide law- and policy-makers with a clear picture of who requests MAiD and why, in order to detect any evidence that MAiD might have unintended effects on Canadians or Canadian society;
- Gather information on the range of options being provided to patients who request MAiD, and whether these alternative options were accessed, or if there were barriers to accessing these options;
- Provide for appropriate thresholds and mechanisms for disclosure to relevant government authorities if practitioners are failing to fulfill their obligations;
- Support the collection of information needed to trigger investigations of complaints; and
- Provide the information required for independent research and evaluation.