Questionnaire for Canadians on Medical Assistance in Dying

Remember to give 5 minutes or so to provide feedback to the federal government on assisted dying legislation. You can access the questionnaire here.

 

I have been an advocate for disability rights for years and I have lived as a disabled person most of my life as I had significant health issues since birth. I believe many of the proposed safeguards just limit access to medically assisted dying rather than truly protect vulnerable people.

 

The best safeguard is in creating a society that values and embraces the differently abled, the aged and those who are very ill. This means helping everyone to engage in meaningful work and valuing their unique gifts. It means making the health care system less horrific to navigate, cutting down on the drastic waiting times for test results; and lack of government and employer support of people raising children or caring for a sick sibling or parent.

 

To me, the most important questions and answers are:

 

SECTION C:

 

1) Yes; current safeguards are adequate/effective; 2) a, b, c and e -- Not important at all; d) Very important: Making sure the person requesting MAID is aware of all the means available to potentially relieve their suffering, including health and social support services is very important.

 

SECTION D:

 

1) Yes and 2) Yes (although in both cases, I think indicating a desire to proceed with MAID in a PERSONAL DIRECTIVE would be ideal, but I do not think this should be required per the legislation.

 

Cleary, the questionnaire reflects pertinent issues that have been raised in the Courts and the media like the "reasonably foreseeable" clause and the issue of advanced consent.

I am worried that few people will consider the implications of question 'e' which asks if there should be:

"Mandatory consultation with an expert in the person’s medical condition and circumstances (for example a gerontologist, psychiatrist, or social worker), in addition to the already mandatory 2 medical assessments."

Many people would be quick to agree that there should be a mandatory consultation with an expert in the person's medical condition, but such legislation could be a terrible barrier to access for people with rare illnesses. There might simply not be a true expert in the field in the person's area. Moreover, of the very few experts in certain fields, none may be willing to participate in the process.

I myself have Common Variable Immunodeficiency (CVID). I was provisionally diagnosed by an allergist and an internal medicine specialist in 2007 and commenced treatment -- specifically, monthly intravenous immunoglobulin therapy (IVIG). In 2012, a pediatric immunologist at the Alberta's Children's Hospital ran a series of tests and confirmed my diagnosis. It was not until 2014 that I was evaluated by a specialist in adult primary Immunodeficiencies. It was a long battle to get Alberta Health Services to hire such a doctor at a hospital in Calgary. I know what it is like to have to fight for one's life and fight for access to experts. It would be awful if suffering was compounded for those with rare illnesses because they were forced to have an expert involved no matter how highly improbable that might be.

I ask that you consider how access to MAID will be affected if a seemingly innocuous criterion becomes part of legislation? Please share with your network so we can generate some awareness and discussion of this issue!