The Rasouli Case and Why It Matters - One Family's Battle For the Right to Consent

Yesterday, newspapers in Canada announced an important Supreme Court ruling for caregivers and their families.  At issue was whether or not physicians had the unilateral right to withdraw life support from a patient on the basis that to continue life support was a) futile and b) that the withdrawal of life support did not constitute 'treatment' and therefore did not require consent from the family.  The physicians in this case are neurologists at Toronto's Sunnybrook Hospital.  The patient in question is Hassan Rasouli, represented by his wife and daughter.  You can read about this case HERE. 

The outcome of this case has important implications for people with disabilities, the elderly and their caregivers.  In fact, interveners in the case consisted of the Consent and Capacity Board, the Euthanasia Prevention Coalition, the Canadian Critical Care Society, the Canadian Association of Critical Care Nurses, the Advocacy Centre for the Elderly, ARCH Disability Law Centre, the Mental Health Legal Committee, HIV & AIDS Legal Clinic Ontario and the Evangelical Fellowship of Canada.  

Reading about this sad and difficult case reminded me of something I wrote for Al Etmanski's blog two years ago - "What Are You Skating Towards" in which I was asked to identify a societal trend affecting caregivers.  Here is what I wrote:

Over the last year, I have observed a pernicious trend toward labelling some people as unworthy of continued care. In 2012, I will be skating defensively toward it. Thanks to information technology, I have many friends all over the world who are also parents of children with disabilities. One family, from Australia, I have known ‘virtually’ for many years - their son has developmental disabilities, is medically complex and has managed to survive over 77 hospitalizations in his 23 years of life. This year, the professional advisory committee at their hospital took a unilateral decision that there would be no more ICU hospitalizations or resuscitation measures because these would ‘not be in the best interest of the patient’ and furthermore, they would be ‘futile’. It was my guess that a meeting of hospital administrators had taken place that basically placed a cap on the public funds that one individual could or should consume in a lifetime - especially if that individual had developmental disabilities.

Of course one can never know whether the financial burden of keeping Mr. Rasouli alive at taxpayers' expense played into this case, but there is no denying that had the Supreme Court decision gone the other way, money could motivate the shutting down of life-sustaining treatment without family consent because a diminished life was deemed "futile" by physicians. 

Here is what the Supreme Court justices wrote in their decision: 

[34]                          The physicians argue that treatment under the HCCA is limited to what the attending physician or caregiver deems to be of medical benefit to the patient (in other words, what is medically indicated).  Mr. Rasouli’s physicians have concluded that life support no longer offers a medical benefit, despite keeping him alive, given his unconscious state and the extreme unlikelihood of his recovery.  It follows, they argue, that the provision of life support to Mr. Rasouli has ceased to be treatment under the HCCA, obviating the need for consent to its withdrawal. 

[35]                          The difficulty with the physicians’ argument is that it substitutes a physician-made criterion for treatment (medical benefit) for the criterion specified in the HCCA for consent (health-related purpose).  These concepts sound similar, but they are in reality different.

Note:  HCCA Stands for the Ontario Health Care Consent Act.

The Supreme Court decision related solely to the laws governing consent at end of life in Ontario.  The fact that the court did not go further in clarifying the national laws regarding family consent when 'turning off' life support disappointed some.  But, it's a start.  And because I live in Ontario, I will sleep a little more soundly tonight knowing that doctors will never be able to withdraw the life support of someone I love without my consent. 

You'll Never Walk Alone

I am proud to call Canadian Supreme Court Justice Rosie Abella a friend.  A few days ago, I was watching the television news when a story about a disability rights case in British Columbia caught my attention.  The case dated back to the 1990's and involved a young lad called Jeffrey Moore who, by the time he finished grade three, still could not read.  Jeffrey didn't even know the alphabet on account of his severe dyslexia.  Jeffrey's parents sued the province of British Columbia for the cost of private tuition that they were forced to purchase when the public system denied special education assistance for young Jeffrey.  It has taken all these years for the case to reach the Supreme Court, but when it did, Rosie wrote the judgement.  "Adequate special education, therefore, is not a dispensable luxury.  For those with severe learning disabilities, it is the ramp that provides access to the statutory commitment to education made to all children in British Columbia." (CTV News Story HERE)

When I saw that story on the news, I wrote to this note to Rosie:

Dear Rosie,

I just wanted to write to tell you how thrilled I am about the ruling that was announced today.  As you can imagine, I was chatting about this ruling with all my friends in the parent movement - we are all thrilled for all the children of the future who will benefit from equal access to a good education.

I wanted to share with you that Nicholas had a great experience in High School.  He attended Notre Dame High School and everyone there from the principal to Nick's aide were absolutely fantastic.  In June, 2005, Senator Jim Munson handed Nicholas a cheque for $1,000 and a "Spirit of the Capital Youth Award for Academic Perseverance".  

Nick wrote this acceptance speech which his aide read to the audience at the Congress Centre awards ceremony:

I would like to thank all the members of The Spirit of the Capital Youth Awards committee for this award.  This award makes me both happy and proud.  I am proud of my school, my teachers and my friends for working together to help me achieve academic success at Notre Dame High School.  I am proud of my family: Mom, Dad, Natalie, for their unfailing love and support.  I am also proud of myself for always trying my best.  I thought that I would share with you my secrets of perseverance.  Talking about pain or ongoing challenges is very boring to me.  I would choose having fun and learning at school over sitting home and complaining any day.  I will never give up in school because, frankly, I am just too curious and excited to find out what is going to happen next in each of my classes.  Some people call this approach having a positive attitude; I call it wanting to express my opinions.  I have opinions in my personal life, my school, my community and my country.  And if I want people to hear my opinions, I know I have to be involved.  I know how to find information about my interests and how to use that information.  I AM NEVER BORED!  My advice to other students is to keep trying, even if it takes a long time to achieve academically.  The world is far more interesting if you know something about it.  At times we all face some difficulties, but it is important to remember to never give up and never give in.  Thank you all, and good luck. 

Then Nick's aide read the words to the song of Nick's favourite English soccer team, Liverpool - You'll Never Walk Alone.

When you walk through a storm
Hold your head up high
And don't be afraid of the dark

At the end of the storm
Is a golden sky
And the sweet silver song of the lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on walk on with hope in your heart
And you'll never walk alone
You'll never walk alone

When you walk through a storm
Hold your head up high
And don't be afraid of the dark

At the end of the storm
Is a golden sky
And the sweet silver song of the lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on walk on with hope in your heart
And you'll never walk alone
You'll never walk

You'll never walk
You'll never walk alone.

Today at the Remembrance Day ceremony, we were standing beside Jim Munson and reminiscing about this great day in Nicholas' life.  Nick's access to an adapted curriculum gave him the skills to go on to study pre-college courses online at the Open University in the UK and then to start an Ebay selling business.  He loves his life.

Love, 

Donna

It was a coincidence that we ran into Senator Jim Munson at the Remembrance Day Ceremony.  He recalled Nicholas very well and together, we talked about the Supreme Court ruling that gives all children the right to equal access to the curriculum, regardless of learning disability.  I am proud to call Rosie Abella a friend and I'm proud to live in a democratic country with equality and rule of law.

Today's Supreme Court Ruling

When I was doing research for my book, I read quite a lot of what American philosopher and Capability Approach expert, Martha Nussbaum, had to say. Nussbaum has been a slow learner where concerns of people with cognitive disabilities are concerned. But in 2009, she came around. In the Journal of Metaphilosophy, Nussbaum wrote:

In short: people with cognitive disabilities are equal citizens, and law ought to show respect for them as full equals. To do so, law must provide such people with equal entitlements to medical care, housing, and other economic needs. That is the easy part. But law must go further, providing people with disabilities truly equal access to education, even when that is costly and involves considerable change in current methods of instruction. Even that, our society has begun to realize. Now we must take the most controversial step of all, giving people with cognitive disabilities political and civil rights on a basis of genuine equality. What that requires, and why it requires something that seems at first look so odd, has been the central theme of this essay. Let the debate begin.

Well, the debate began and ended today in Canada's Supreme Court. In an earlier lower court trial, a young woman with cognitive disabilities was prevented from testifying against her mother's partner who allegedly sexually assaulted her repeatedly. Apparently, the woman failed to pass a required competency test requiring her to distinguish between truth and lies. Without victim testimony, the accused was acquitted. Today, a new trial was ordered for a young woman, this time allowing for her testimony. In a 6-3 decision, the Supreme Court sent a message to the courts of Canada that testimony of people with cognitive disabilities must be accepted without first having to pass a competency test. If you care about fairness for vulnerable people, it's worth reading the Supreme Court decision.

Today, I'm especially proud to be Canadian.