Thursday, July 27, 2017

Thoughts on Medical Aid in Dying

Many parents of children with special needs in this province received a swift punch in the gut this week when a news story came out about a mother in St. Anthony who was told by a doctor that assisted suicide was a recommended option for her daughter.

Here is a link to The Telegram article and a related article on CBC.

The Coalition of Persons with Disabilities - NL has released a position statement in response to a recent article in The Telegram around Medical Aid in Dying (MAiD).
 
Coalition Executive Director, Emily Christy, was deeply troubled when she read the article “Repulsed by Suggestion” (Section A6) on July 21, 2017. In her Letter to the Editor of The Telegram, Christy voiced the following concerns:

“I could not believe what I was reading. A doctor in St. Anthony had offered Medical Aid in Dying (MAiD) to the mother of a woman with spina bifida, cerebral palsy and chronic seizure disorder. Just finishing up the night before, we were talking about ways the federal government can work towards making our country more inclusive, breaking down barriers and fighting attitudinal discrimination and stigmas against persons with disabilities and the next day, I read about an overt discriminatory situation happening right now in our province.  

Here’s why this situation is a human rights issue. In Canada, we now have legislation that allows for individuals to request Medical Aid in Dying. There are important and clearly essential safeguards in place that ensure an individual’s rights are upheld and that coercion is not factored into an individual’s decision to make that choice. Now, it should be clear that I have deliberately used a very specific word in my last sentence – CHOICE. The legislation clearly states that this is about the individual’s choice to have this option considered. It is, however, not a doctor’s place to offer this as an option. Because that is where lies the grey area of coercion. In fact, in order for someone to be eligible for MAiD, it clearly states an individual “make a voluntary request for medical assistance in dying that is not the result of outside pressure or influence.”  Medical professionals are in a position of power and their biases can influence someone’s choice, especially when they make their own discriminatory decisions about someone’s value and worth—a fate far too often felt by people with disabilities.  

Another eligibility criteria on the list is to have a “grievous and irremediable medical condition.” This eligibility component is one the disability community advocates are more worried about. Because, of course, under this section it says the patient must “have a serious illness, disease or disability.” And in the case of Candice Lewis of St. Anthony, she does have a series of complex disabilities, one’s she has had her whole life – for 25 years. However, it is simply not just about having a disability that makes you eligible for MAiD. You are required to meet all four requirements under the “grievous and irremediable medical condition.”  You must also “be in an advanced state of decline that cannot be reversed, experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable,” and “be at a point where your natural death has become reasonably foreseeable.”  

The new Medical Aid in Dying Act was assented by the federal government June 17, 2016. Yet, we have heard little from the Government of Newfoundland and Labrador on how they intend to ensure the lives of persons with disabilities are respected and protected under this law. No parent wants to hear that their child is a “burden” or that they are “being selfish” for loving them, taking care of them and making sure their needs are met the best they can. What they want to hear is that the health authorities in this province are here to help and provide the best care possible for their loved one and work together to make that happen.”  

When my son, Brennen was born, I remember feeling completely lost and entirely unprepared for what we were thrown into. I was terrified of what our future might hold and was afraid to even think too far ahead. I worried about his quality of life. I worried about the struggles he would have and the challenges he would face. Would he ever walk or talk? Would he reach certain milestones?

I know now that quality of life is not measured by milestones or accomplishments. It is not for others to judge by what one can or cannot do. If quality of life is based instead on the love and joy that surrounds us, and the experiences and relationships that are nurtured, then Brennen has a quality of life greater than anyone I know.

I am sure that Candice Lewis's mom would say the same about her daughter, and my heart breaks for what they have had to go through. Like all parents, what we want most in this life is for our children to grow up feeling safe and loved, and for them to become valued members of welcoming communities. While my son's physical limitations are extreme and his level of cognitive understanding is unknown, his inner light is phenomenally bright. I am grateful for every day that I get to be his mom, and no doctor has the right to suggest otherwise.



2 comments:

  1. I hate to say this, but the law is working exactly as intended. The doctor's mistake: not euthanizing and then claiming death afterward; his other mistake, not asking the 25 year old who can communicate, and then interpreting her answer to suit his aims. A further organizational mistake: the nurse saying the daughter was a 'frequent flyer'. The organization will review to make sure news of this isn't public again. What I find interesting is that no-one has talked to Candace herself in a longer interview. The disabled daughter has been media silenced...but, as I say, everything is normal as the story is presented. I'm disabled myself so I'm not surprised.

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  2. this article is so well done. As i am a person with a disability it was a shock to here that a doctor felt the need to push his views on that poor family.

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