Context
Medical Assistance in Dying was legalized under strict conditions in Canada in 2016.
Given that:
People with intellectual disabilities regularly confront barriers to accessing the disability supports needed to live a quality life – in particular, income supports, assistive technologies, homemaking and personal supports, inclusive education, training and employment supports, and appropriate community-based mental health supports;
People with intellectual disabilities are marginalized in Canadian society through significantly higher than average rates of poverty, social isolation, lack of affordable and accessible housing, homelessness, unemployment and exclusion from the labour force, inaccessible health care, and violence and abuse;
People with intellectual disabilities experience widespread discrimination in society based on prejudice and negative stereotypes which commonly devalue their abilities and lives, including from some medical professionals and healthcare ethicists whose discriminatory views about disability can influence their judgement and behaviour;
In Canadian society, disability is closely associated with suffering which can make a person with an intellectual disability’s desire to die seem reasonable and natural to others; and,
All of these factors result in higher rates of suicidality for people with intellectual disabilities than in the general population.
And with the understanding that:
Federal and Provincial governments in Canada must actively protect the equality rights of persons with disabilities including intellectual disabilities.
The United Nations’ Special Rapporteur on the rights of persons with disabilities has called upon Canada to affirm a rights-based approach to disability supports.
Measures are required to counteract stigma and exclusion, encourage self-esteem and self-confidence, and promote a positive public perception of persons with disabilities.
Federal and provincial governments in Canada must avoid sending a message that having a disability is an acceptable reason to be put to death. Lives featuring disability, frailty, and suffering can be lives worth living.
Many persons with intellectual disabilities can give legal consent on their own for fundamental medical decisions, including medical assistance in dying.
Many persons with intellectual disabilities experience coercion and pressure to please others or to not be a burden.
Inclusion Canada is of the view that Canada’s Medical Assistance in Dying laws must:
Restrict access to those at the end of their natural life whose suffering is intolerable and cannot be alleviated by any acceptable means.
Require that requests originate only from the person seeking an assisted death and be unprompted and unequivocal.
Guarantee the opportunity for a person to change their mind and withdraw their request at any point prior to the administration of an assisted death.
Require free and informed consent from the person seeking an assisted death, without coercion or undue influence, and provide for the communication supports necessary to facilitate consent. Consent must be consistently re-affirmed over time.
Promote holistic care by engaging with a diverse array of experts including those who have authority to advocate for better social and disability supports, and, wherever possible, persons who are familiar with the individual seeking an assisted death.
Require exploration with the person requesting medical assistance in dying of physical, social, spiritual and psychological factors that may underlie their suffering, and ways these could be alleviated.
Ensure that medical assistance in dying be authorized only as a procedure of last resort, after alternative courses of action, including palliative care, appropriate disability supports, and respite services have been made available.
Establish a comprehensive monitoring system that captures:
– The nature and source of a person’s suffering and their reasons for requesting medical assistance in dying.
– The voice of persons seeking access to assistance in dying, and their families and support systems where appropriate (rather than relying on the reporting of medical practitioners alone).
– Demographics: socio-economic status, race, gender, sexuality, indigeneity, age, mental illness, and disability, in such a way that intersectional marginalization can be tracked.
