Wednesday, October 16, 2013

What motivates me?

I view what happened to me as a deprivation of my human rights as a patient and as a woman to make a medical decision for myself and expect that decision to be reasonably respected and facilitated. I gave informed consent for a specific medical procedure (cesarean - or if labour commenced an urgent cesarean) - I knew the risks and benefits of both planned vaginal delivery and planned cesarean delivery and I chose cesarean. When I was deprived of that choice, without warning and without consultation - and a wholly different procedure was imposed upon me (vaginal delivery) - it is difficult to convey how disruptive that was. When I later discovered that such deprivation was without just cause, I was shattered. All my life, I was raised to believe that I had dominion over my own body. I had the right to consent what happened to it. I had the right to not have that right interfered with - and I believed that that right was protected by the Canadian Constitution via the Canadian Charter of Rights and Freedoms. I never believed that choosing to be pregnant would be adequate cause to deprive me of my human rights.

Yet, there I was - stripped of a fundamental human right. There I was, a well-educated, well-informed, confident woman - believing I was entitled to informed consent and respect for my medical decisions and being deprived of both. I never believed it could happen to me, until it did. And, if it could happen to me - then what is to stop it from happening to any other woman? What is to stop it from happening to my daughter?

And after it happened, came the hard questions - What was I going to do about it? What could I do about it? It is all well and good to think that you have rights, but unless you can hold others meaningfully accountable for violations of those rights, did you ever really have the rights to begin with? If I wasn't willing to find some way to hold those who deprived me of my rights accountable - could I expect other women to? If those responsible for depriving pregnant women of their rights to informed consent and autonomy were never held to account, how is it possible for such violations to stop, for the system to change? How is it possible for victims of those violations to move on with their lives without any recourse or acknowledgement that they were wronged in a most serious way?

It is sad when those who find themselves deprived of their rights are left bereft of meaningful recourse - it adds insult to injury. Yet, the way the system currently is, recourse remains tremendously risky and out of reach for many patients who have been deprived of their right to informed consent and autonomy - including pregnant women. In Canada - the healthcare system is structured in such a way that deprivations of rights are almost certain to be free of meaningful consequence. In Canada, defendents (doctors and hospitals) have the full resources of the Canadian Medical Protective Association at their disposal to defend against any patient brave enough to bring forward a claim. Meanwhile patients are left struggling to find access to justice, struggling to find a lawyer to take on their claims, and struggling with the risks that pursuing a claim might involve. In Canada - if a patient brings forward a claim and fails at trial, not only will they bear the costs of their own litigation, but the defendents may also be awarded costs adding further insult to injury. In Canada - damages tend to be so limited that many cases involving deprivations of patient rights, absent catastrophic injury or loss, are simply uneconomic to pursue. In Canada, access to justice for patients wanting to assert their rights is effectively barred.

It is a vicious cycle of human rights violations that will continue. The system will continue to operate as it does, unless it becomes uneconomic to violate patient rights to informed consent and autonomy. It won't become uneconomic to violate those rights, unless patients demand accountability when those rights are violated. Patients will not can not demand accountability, unless they are enabled to do so.

I am determined to assert my human rights and demand accountability for the violation of those rights - the question is, will I (and others) be enabled to do so? Will those who can help make this happen, step forward?

That is what motivates me.

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