By Rebecca Richmond, NCLN Executive Director
ALS often come up when euthanasia and assisted suicide are discussed. The disease seems to be the poster child for the ‘right to die’ movement, and has been a part of major court cases including Gloria Taylor’s involvement in the recent Carter case and the 1993 Supreme Court case of Sue Rodriguez.
“Don’t you know about ALS/Lou Gehrig’s disease?” I’ve been asked by those who support assisted suicide. “How would you feel if it was your loved one dying of ALS? Do you know what the disease does?”
Amyotrophic lateral sclerosis? Yes, I do actually.
Several years ago my dad’s sister – my aunt and godmother – was diagnosed with the degenerative motor neuron disease that had also killed her grandmother many years before. Most patients only live between 3-5 years, but my aunt deteriorated quickly and we lost her on September 29, 2009 – only 13 months after diagnosis.
Even before the disease was officially diagnosed, she had to stop teaching due to problems with balance and standing. She called it ‘getting tippy’. By the time the disease had been officially diagnosed later that August, her mobility had been severely curtailed and the disease was already beginning to affect her speech. She warned my dad to let us kids know that if we picked up the phone and heard a drunk person on the other end, it was just their aunt.
Her approach to the disease mirrored her approach to life: blunt and practical. She quickly mobilized her husband and friends to rearrange the house for her so she had access to her scrapbooking materials and computer, and had a chair lift put in to help her get up and down the stairs. Legal matters were taken care of soon after the diagnosis as well. There was never any “Why me?” questions; she just hunkered down to handle life as it was presented to her. It was her way of doing things.
Despite living in a small farming community in Saskatchewan, she was able to get the assistance she needed to live at home for several months. Her condition worsened rapidly – much too rapidly – and despite the heroic efforts of my uncle and her home care providers, she had to be admitted to a palliative care unit in a nearby small town hospital early the next spring where she remained until her death in the fall. Her memorial service was held at the community hall to accommodate the crowd of friends, colleagues, family and former students from decades of teaching who came to pay their respects.
ALS is a ghastly disease. My aunt quickly lost her independence, and became reliant on others for the basics that we take for granted. She soon lost her ability to speak, and near the end of her life it was almost impossible for her to communicate. Through it all, her husband and the medical team continued to lavish their love and care on her to alleviate her pain and suffering as much as possible until she died. She was an individual with dignity, and was treated with dignity, despite all the indignities the disease subjected her to.
I hesitated before I began to write, I hesitated before I sent it to my dad to look over, and I hesitated before I posted it. I do not want anyone to misinterpret my meaning. I am not glorifying my aunt’s suffering nor am I trying to make her the new poster child of our movement. My aunt would not be anyone’s poster child, thanks very much. My point is this: I am aware that ALS has a very human face to it. But it is precisely that humanity, and the humanity of all the vulnerable, that puts me firmly against euthanasia and assisted suicide. I hate the fact that my aunt’s killer is being used as an excuse to allow killing. I shudder to think how the medical system would have treated my aunt if euthanasia and assisted suicide was a part of the Canadian health care system. Would they have seen her as a financial burden to the system? Would they have done a cost-benefit analysis on her life? Would her ability to function have come to define her value?
And while Gloria Taylor and Sue Rodriguez gave a face to the euthanasia and assisted suicide movement in Canada, their stories are not the only stories. Legalizing assisted suicide and euthanasia endangers our seniors, our friends and family with special needs and those suffering from diseases. These stories and our stories matter too.
I certainly wish my aunt hadn’t suffered or died, especially from such a horrific disease. I would like to see more research done on currently incurable diseases like ALS. I would like to see palliative care and pain relief improve. But creating a right to kill will not make that happen, nor is killing an acceptable way to ‘alleviate’ suffering. Instead, by allowing doctors to kill the sufferers, it only endangers the lives of all the vulnerable.
For more information and analysis on the Carter Case and the issue in general, please visit our Euthanasia Resource page.
Author’s note: Special thanks to my father for his contributions to this piece and for his encouragement.