On May 4th, I watched CBC’s The Fifth Estate about Gloria Taylor who suffered from Amyotrophic Lateral Sclerosis (ALS). [Note: a brief excerpt of this programme can be found on YouTube.] It was so moving to listen to her and her family and friends. And, as I listened to her and what she was fighting for, I marvelled at her courage. And I got angry.
About 20 years ago, Sue Rodriguez, who also suffered from ALS (also known as Lou Gehrig’s Disease), went to court in British Columbia in order to win the right to end her life with dignity – on her own terms, and at a time of her choosing and without those who might help her being prosecuted for providing their help. The case went all the way through the judicial system to the Supreme Court of Canada. Rodriguez lost her case. Canada and Canadians were not ready to consider the possibility of physician assisted death.
But that was 20 years ago. As our society ages and as our sensibilities about what we want for ourselves change, as we face our own mortality, we have become more open to considering this option for those who are suffering from terminal illnesses [like ALS and Alzheimer’s Disease] and for whom there is no remedy for their pain and loss of self through palliative care.
I have lost relatives to cancer. I have looked into their eyes and I knew that their spirit was still vital and that it was trapped in their bodies. I think that is what hurt both of us most – seeing the anger, hurt, and confusion each of them felt because they were no longer the person they had always known themselves to be, and knowing that there was no force in this world which could alleviate their turmoil. They were waiting – helpless and hopeless.
And I’ve been thinking about a former singing teacher. She is only about 10 years older than I am and last week I was told that she has terminal lung cancer [and, no, she was never a smoker] and is now in palliative care in a hospital in Toronto. I was told that she is prepared to die and no one knows how much longer she will live.
I have no patience for the arguments that palliative care provides sufficient support for those who are in the final stages of a terminal illness. What does palliative care do? It manages physical pain and often anesthetizes those who are ill so that they become numb. That is not living! That’s warehousing people until they stop breathing and their hearts stop beating. The doctor in The Life and Death of Gloria Taylor who stated that you can’t give everyone everything they want and that includes the timing and manner of their death made the case for palliative care. And my only thought was that I hope that he has a better doctor looking after him than he is to his terminally ill patients for whom palliative care can provide no remedy.
And I have no patience for the suggestion that, if doctors have the right to assist their patients’ dying, then the doctors, for a fee or a share of any inheritance, will become unscrupulous conspirators with grasping family members who want to get their hands on the ‘family fortune’. That hasn’t happened anywhere else in the world where physician assisted death is legal. What? Are Canadian doctors all corrupt or corruptible?
There is also the mindset that suggests that, if doctors were given the right to help their terminally ill patients to die, these doctors would become ‘angels of death’ – that they would make the decision to die for their terminally ill patient. That’s really skewed thinking. We trust our doctors to help us when we are ill but we don’t trust them to help us when we, if we are part of the small percentage of the terminally ill for whom palliative care can offer no hope of living, choose the timing and manner of our death? And that has not happened anywhere in the world where physician assisted death is legal.
And then there is the argument that if any doctor were to be part of any physician assisted death, then the doctor would be betraying the Hippocratic Oath which each takes upon entering that profession. “First, do no harm.” The case has been made that to help anyone in choosing the manner of their death is to cause that person harm.
I find it truly incomprehensible to suggest it would cause a person harm to help them to end their life when their condition is terminal and when they know that their quality of life has deteriorated to such a degree that they cannot bear to live without engagement and joy. To my mind, what does harm is taking over the decision for the terminally ill and, in essence, forcing them to continue to exist in a manner which is anathema to them. Gloria Taylor made this point strongly.
So the British Columbia court had the courage to say that the right of a terminally ill patient to have the option of physician assisted death is guaranteed by the Charter of Rights and Freedoms. The BC court gave Parliament a year to address the law and change it. And the federal government has weighed in on the issue in court and so there is no final resolution in Canada – still.
So what can Canadians do? Come up with their own ‘Plan B’ and solicit the help of friends so that they can choose for themselves – so that they have an option. Or arrange to go to a clinic in Europe where physician assisted death is legal.
What Gloria Taylor and Sue Rodriguez wanted was the right to an option. They both wanted to live their lives to the end of their lives and to be able to die at home surrounded by family and friends. And they both wanted to have some say in how they died with the full involvement of family and friends so that they could leave on their own terms and their loved ones would be able to heal.
Hell! We treat our terminally ill pets better!