This blog is part of "Monitoring Matters", a special series of guest blogs by VPS Advisors.
By Donna Thomson, VPS Advisor
In 2005, our son Nicholas was admitted to the palliative care team at our local Children’s Hospital. Nick’s severe cerebral palsy was complicated by uncontrolled pain, epilepsy and respiratory complications. Everyone in our family, especially Nick, was desperate for comfort, rest and end to the nightmare of constant suffering.
As our son’s mother and his principal caregiver, I never stopped advocating for treatment solutions to alleviate Nick’s pain. That said, my husband and I promised that there would be no more surgery or painful interventions – we sought comfort measures and ways to enable a rich life, though restricted, for everyone in our family.
The backdrop to our home drama was the Latimer case. In my book, The Four Walls of My Freedom, I wrote “Back in January 2001, I had written a letter to the editor of the Ottawa newspaper supporting the Supreme Court of Canada’s ruling on Robert Latimer’s sentence. I believe that the public would have reacted very differently if Tracy Latimer had been able-bodied, or if she had been suffering from the effects of cancer, for example. It seemed evident to me that because many people were repulsed by the awfulness of giving total care to someone as disabled as Tracy, they assuaged their guilt by supporting Robert Latimer — exalting him, even. People who supported Robert Latimer were so afraid of dependency that they were pleased to erase the evidence of it.”
Tracy Latimer’s disabilities were similar to those of our Nicholas in many ways and in 2005, her case still pervaded the public imagination. For us the possibility of tasking medical professionals to manage our son’s pain and offer our family ways and means to live a good life was a challenge. Nicholas was almost ‘written off’ as not worth treating.
Nicholas survived and today he lives a very rich life with the benefit of one to one nursing care. But if MAiD had been available in 2005, I believe it would have been proposed as a viable option. Supporting the life of someone whose dependency needs are very high is expensive. So naturally, the cost/benefit of delivering high levels of care is evaluated by taxpayers, policymakers, health care administrators and even by patients and families themselves. The thing is, our son loves his life. From his bed or chair, he adapts his preferences to his abilities. He manages a sports betting pool for family and friends, writes a sports blog using a switch activated computer, tweets his views on politics and listens to audible books. He has many friends who love him.
Nicholas has funding arrangements that enable him to survive and live well. Without this care (that my husband and I are now too old to provide), Nick’s life would indeed be miserable and certainly, he would die. The Vulnerable Persons Standard protects his care and life because it proposes that a life like our son’s has value and is possible as a viable alternative to physician assisted dying.
In the case of children and youth with severe disabilities and/or chronic disease, conversations about MAiD will take place – hospital administrators are struggling to prepare for this new reality. The ‘life worth living’ arguments will be made by those closest to the child and family and no MAiD discussion should occur without a thorough review of treatments, supports and services that are available to alleviate suffering and enhance quality of life. Our only way to ensure that such reviews are openly and honestly undertaken is to specify that physicians report on the substance of their MAiD discussions as part of the information required by the MAiD regulations.
My worry is that in this climate of austerity, home care budgets and patient/family support options will be artificially limited by financial bottom-lines. The need is urgent for a national monitoring system that give Canadians confidence that we are not creeping toward increased reliance on MAiD in response to shrinking health and home care budgets.
If our son is given the choice of doing without a nurse to restart his breathing or physician assisted dying, I think he would take his chances on the former. But the decision would be his and we are blessed that he has the supports he needs in order to thrive.
MAiD is a slippery slope for people with disabilities and their families. We need to protect our right to live and live well. The Vulnerable Persons Standard will ensure that happens.
Donna Thomson is an advisor on the VPS. She is the author of The Four Walls of My Freedom (House of Anansi Press, 2014) and blogs regularly at The Caregivers’ Living Room (donnathomson.com). Donna is a board director of Kids Brain Health Network and is a champion of family engagement in childhood disability research.