Tuesday 19 June 2012

Kill Me Now, I'm Disabled - The Assisted Suicide Debate

Yesterday, I was listening to the radio on my drive home from Montreal.  I had driven from our cottage in the Quebec Laurentians in the early morning to join my sister because, finally, our Mum was being discharged from the hospital after a long stay.

There is a lot to do when someone's care needs change.  Although she's 90 years young, my Mum is usually very independent.  But a long stay in a hospital bed changed all that for the time being.  She will need time and TLC to get her mojo back.  In my family, we understand the ebbs and flows of independence and dependency.... and of health and frailty.  We are OK with it and we know how to put support in place and how to take it away when it becomes redundant.  We know how to have a good time in reduced circumstances and we believe in the value of that experience.

So, back to the car ride and the radio.  I was listening to a CBC news story that dominated yesterday's press coverage in Canada.  The Supreme Court of British Columbia ruled that Canadian law banning doctor assisted suicide is unconstitutional.  In her lengthy and complicated judgement, Judge Lynn Smith wrote, "the law must allow physician-assisted suicide in cases involving patients who are diagnosed with a serious illness or disability and who are experiencing “intolerable” physical or psychological suffering with no chance of improvement."

Gloria Taylor is a BC woman who suffers from ALS (Lou Gehrig's Disease) - she spoke to reporters, representing the small group of plaintiffs who challenged the law.  Taylor argued that she wanted the choice to end her own life with dignity, rather than suffer the ravages of ALS in its last stages.

I have written before about euthanasia - it's a complicated issue and one that is different from doctor assisted suicide.  But there was something deeply disturbing about the way that Gloria Taylor talked about her life with ALS and her reasons for challenging the law.  

I will paraphrase Taylor from my memory of the radio interview: she said that she had lost the use of her legs, so now, with a power wheelchair, she could not visit her family (except for her mother who happens to have an accessible home).  The ALS was causing Taylor to lose her voice.  She expressed despondency about not being able to communicating with her children or grandchildren after the complete loss of her speech.  She said that the greatest indignity of her life was needing assistance to use public toilets (the assistive devices in her home allowed her to be independent in her own bathroom).  And Taylor's worst fear she expressed this way, “To die screaming at the top of my lungs because the pain is so great that I can’t stand it is something I try not to think about”.

So, as the parent of son with complex disabilities, what do I think about all of this?   

I believe that pain should be considered separately from dependency matters.  That's one thing.  Pain management should have its own rules and the law should support patients and doctors working together in the best practice of palliative care.  No one should have uncontrolled pain, ever.

To me, Gloria Taylor's remarks reveal a dangerous trend in today's society - an aversion to dependency in all its forms.  I believe that we should not support this view and certainly not entrench it into law.  Of course, any debilitating and progressive disease is a tragedy for the individual and their family, that is a given.  But life with diminished physical capabilities can be very rich, especially with the help of technology.  

Let me use Nicholas as an example of how this works.  Nick's friends do not have wheelchair accessible homes, so they meet at the pub, or at sports venues.  Often, Nicholas hosts his friends and family to take maximum advantage of shared interests.  Nicholas is non-speaking, so he uses an Ipad with a software programme called ProloQuo2Go in order to communicate.  The adult rehabilitation in our city does a terrific job of equipping ALS sufferers with the equipment they need to communicate non-verbally.  Life with fewer physical abilities need not be tragic.  Loving relationships combined with assistive technology will see to that. 

There will always be people who believe that life is not worth living with reduced capabilities.  Even my own father felt that way after his debilitating strokes.  But our law should not enable doctors to assist suicide on the basis of increased dependency.  Rather, our laws should support society in giving value to meeting dependency needs.  Children are dependent, mothers giving birth are dependent, people aging and dying are dependent.  It's part of life and we need to support our vulnerable citizens throughout everyone's life cycle.  


Paul said...

Dear Donna,

I agree you with 100% regarding what you have said.

With regards to pain management my understanding is that there are pain management drugs that are 50 times stronger than morphine. I believe that nobody should ever, ever, be in unbearable pain..

God bless and seeya,


The Caregivers' Living Room said...

I agree with you about pain. Pain is a monster which I have written about in my book - to die with pain is inexcusable in this day and age.

Anonymous said...

I respectfully disagree. I believe that as with everything, we share many of the same views and also we often have opposing views. I think that no one should legislate what we should or should not do regarding our own health, lifestyle and death. I believe in personal choice. If and when I decide that my life is not tenable to ME, I plan to end it. That is not a judgement against anyone else, just a personal choice that I intend for myself, just as your experience is dictating your personal truth. I do not de-value life at all but my experience and decisions will be my own. I have a way that I prefer to live in this life, that is all and I do not fear death or see it as an end to anything except a body.

The Caregivers' Living Room said...

I agree with you and certainly no one is saying that you should not have the right to end your own life - of course we should all have that right. What worries me is other people having the right to take your life, or my life and especially my son's life because he is non speaking. With a law that allows doctor assisted suicide, I just worry that there may be some people judging the quality of life of those who cannot speak for themselves - I think that happened in the Robert Latimer case.

I am glad that the BC Supreme Court made this ruling because now we have the opportunity to discuss publicly in a myriad of fora and at the federal Supreme Court.

Anonymous said...


I believe in the right to life, as I've had two outstanding teachers, Louise and you. But, if we are going to legalize assisted suicide for those who are terminally ill, than, it is only fair that our government work with the corporate sector, and those in the community to develop resources, in an attempt to create, "A life of fulfullment, dignity, and worth for those with disabilities."

Afterwards, we can truly allow every individual to decide for themselves: Life or death?

As of right now, people will surrender to their fears in difficult economic times.

Matt Kamaratakis

The Caregivers' Living Room said...

I agree, Matt! Thank you for sharing your thoughts.

Tanya Criswell said...

I don't know how to feel about this assisted suicide. Patients and family who choose to do it have reasons but it won't change the fact that it's not gonna be easy. I can't imagine me making that big decision because for sure I'll break down. I can't bear to see someone I love in pain, but I don't know what I'll do if they'll request it to end their agony.