Giving people a voice

I have received many comments regarding the video of Marie Elena Silva, many positive and some less so. I would like to explain what is special about her story and to provide depth on some of her comments.

It is important to realize that Bill C-384 does not only make euthanasia available for the terminally ill, but for anyone experiencing “severe physical or mental pain without any prospect of relief.” Many people fall under this rubric including persons with disabilities and persons with chronic illness.

Marie Elena is a woman with a chronic degenerative illness. She is not going to die tomorrow or months from now but her condition will continue to worsen for the rest of her life, and with the passage of time she will require greater assistance. To provide clear examples, at present, Marie Elena receives 2 hrs of home-based care per day provided by the CLSC; the rest of the time she is on her own with some assistance from family and friends. It is during these home – based care visits that Marie Elena is given a bath – she is given a bath twice a week.  As difficult as this may sound there are hundreds of other people like her on waiting lists to receive such care.

The day she realized she could no longer bathe herself – she cried. When I heard this I tried to imagine what it would feel like to be a grown woman who used to be able to bathe herself and, having lost that ability, had to wait for someone to bathe her twice a week.

People like Marie Elena are extremely vulnerable, they experience a gradual loss of autonomy and easily fall into the category of “severe physical or mental pain without prospect of relief.” She will never get better. She is exactly the type of person who will feel an on-going sense of loss of dignity as her condition worsens.  She will feel (and already does to some extent) like a burden to others and she will feel guilt at the exhaustion of her caregivers. Marie Elena and other chronically ill people could easily feel pressured into ending their lives in such a context. This is what she and many in the disability rights movement fear – the pressure to die in the context of doctors with the legal authority to intentionally kill a patient upon request.

No one in the media is speaking for the chronically ill and yet they will represent a majority of people who are suffering,  will require long-term care and will have the option to request death until Bill C-384.  The fears of patients like Marie Elena need to be taken seriously – they are based the experience of others looking at her and wondering whether her life is worth living. She thinks it is.