In my previous post I referred to my direct role in the well publicized Stephen Dawson 'right to treatment' case in the mid-1980's. My ethical position on euthanasia stems from this and over 30 years of close association with people with disabilities. First some background.
Stephen was a young boy with cerebral palsy when the shunt which drained cerebral fluid into his stomach became blocked. Cerebral fluid drains on its own for most of us but because of Stephen's medical condition he needed a shunt. Stephen was living at Sunny Hill Hospital in Vancouver. His parents had relinquished their legal responsibilities for him. The lower Family Court gave care of Stephen back to his parents who had decided they would not unblock or replace his shunt. This would cause his painful death as cerebral fluid pressure intensified.
I was Executive Director of the BC Association for the Mentally Retarded at the time (now BC Association for Community Living) and on Stephen's behalf and as a 'friend of the court' we took the case to the BC Supreme Court. There, Justice McKenzie determined Stephen should have his operation. His conclusion: "I cannot accept the view that Stephen would be better off dead . . . This would mean regarding the life of a handicapped child as not only less valuable than the life of a normal child, but so much less valuable that it is not worth preserving." McKenzie J., Re Stephen Dawson (1983), 3 W.W.R. 629 (B.C.S.C.)
Now for my insights:
One, euphemisms are dangerous In Stephen's case a general practitioner who had just met Stephen determined he was living in a 'semi-vegetative' state. "Ah," concluded the judge, the media and many others, "Semi vegetable – that means he's not really human. And everyone knows vegetables don't feel pain. Therefore what's wrong with letting him die. It's probably the decent thing to do." Unfortunately the doctor let his biases cloud his judgment. He never thought to check with medical, nursing and therapeutic staff at Sunny Hill hospital about Stepehn's capabilities.
Other euphemisms to be suspicious of include: dying with dignity; burden; humane; mercy killing; he 'functions' at a three (day/month/year) level (take your pick I've heard them all); for their own good; and quality of life. These are meaningless terms but laden with assumptions, bias and prejudice. I have seen them used to justify the deaths of numerous people with disabilities in British Columbia. These terms continue to threaten the lives of vulnerable people.
Two, 'quality of life' changes with context and time Perhaps the most telling argument in favour of Stephen's life was made by the Head of Medicine at Sunny Hill. He testified that Stephen's quality of life was extremely high within his environment. He loved music, was happy and responsive to his surroundings and the people around him. Further, he testified, it would be unfair to compare Stephen's quality of life with someone, for example, who loved driving his sports car with the top down. Quality of life is context specific and shifts for all of us. I have met many people with disabilities who wanted to commit suicide in the months following their disabling injury. Now they testify to a high quality of life. Most of us, to our surprise, adapt and adjust to changing life circumstances. The life force is strong in everyone and shouldn't be underestimated.
Three, terminal illness and disability are incorrectly assumed to be the same The most repeated equation during Stephen's court case was: he is severely disabled and severely retarded therefore he is terminally ill therefore he should be allowed to die. This 'ill' logic enabled media commentators and the lower Court Judge to ignore the pain Stephen was in by NOT having the routine operation to unblock his shunt.
Four, extraordinary measures get confused with routine treatment when you have a disability While Stephen Dawson's future was being widely discussed in the media across Canada, the debate about Karen Quinlan was raging across the US. Karen was in a coma and her family wanted to withdraw life supports which they considered extraordinary measures. (Incidentally they didn't want to end her life just withdraw life supports.) Stephen on the other hand was not in a coma and needed a routine straight forward medical procedure. Time and again the media would compare Stephen's procedure with the extraordinary life supports to Quinlan who was in a coma.
Five, doctors are healers Doctors care for people, they cure, they mend, they restore, they comfort. They don't destroy. They have a generosity of spirit. They work with grace and compassion. They understand the limits of medicine and will admit to the mysteries of healing. Some however have succumbed to the science of medicine. They belive they are omnipotent. They want to control for everything. For your healing. And if, that doesn't work, for your death. And they want it legally sanctionned. They seek to reconcile the healing-killing paradox.
For a disturbing account of institutionalizing the principle of 'killing to heal' see Robert Jay Lifton's, The Nazi Doctors: Medical Killing and the Psychology of Genocide. Read about his Faustian concept of doubling It may provide some insight into why some doctors want to hijack the healing profession.
In conclusion, dying with dignity advocates forget that their objectives affect more than their members. They impact the lives of hundereds of thousands of vulnerable people. There are more ethical considerations at stake than legalizing their right to die. It is to be hoped the Quebec Special Committee on Dying with Dignity will consider them.
FOOTNOTES: I have kept in touch with Stephen and his father over the years. Today Stephen is an avid country music fan and ardent churchgoer and lives in a community ouside Vancouver. The hapless GP who used that non-medical term, 'semi-vegetative', suffered professional embarrassment and quickly moved away from Vancouver.
I have never written about the Stephen Dawson court case before. A number of people were instrumental in the successful conclusion of his court case: Dana Brynelson, David Vickers, Gerry Bellett, Phil Russell, Sally Rogow, Dr. Sid Segal, and many others including the wife of Dr. Robinson the former Director of Medicine, Sunny Hill Hospital.
Wow! Al, you are at the height of your powers at this time. Great work. I urge other readers to check out the Lifton link.
Thanks David. The phrases used by dying with dignity advocates; authorities I have dealt with regarding abuse, neglect and deaths of people and the Nazi doctors quoted by Lifton are eerily similar.
Good to have you blogging again Al. The sockeye-inspired piece was right on. And your writing about euthanasia is thought provoking and important – so glad you’re sharing it. The back story on Stephen is powerful – I read it last night and it’s stayed with me. -s
Living with Dignity network Vivre dans la Dignité
#2 blog is right on again.
One more time, I wish we could translate this piece automatically in French.As the traveling Select committee starts on Tuesday, Quebecers need to read and hear first hand experience the stories that make us feel REAL human and compassionate.
Director of Living with Dignity network
Note: Living with Dignity present its brief in front of the committee between 11h00 and 12h00. It can be heard at https://www.assnat.qc.ca/fr/video-audio/index.html (in French only) sorry
I love Justice McKenzie’s word. It was a shining moment for the disability community. That was in 1983 however. What has happened since? Would a case like Stephen Dawson come through the courts again? I believe that the doctors would make the decisions, quietly, through the night. Can we truly believe that consent laws exist for the disabled? I don’t think so. My daughter died years ago and I am still wondering where the final records and the lethal quantities of narcotics withdrawn went to.
Which lives to doctors consider not worthy of life? where is the threshold? I am sad to say that it does not seem to me that Stephen would pass the assessment.See article attached regarding working definition of futility.
Hi Al, thanks so much for your many contributions and for bringing the Dawson case back again for our consideration. I am so pleased to know that Stephen is doing well, enjoying his country music and community life. He came pretty close to the edge back then. I would be very grateful now if you could respond to the Latimer case. The press took the position early on that this was a ‘mercy killing’ and never veered from this. Public opinion therefore remains firmly on Latimer’s side in Canada.The fact that the family would not accept community support or respite, that Tracy was loved by her teachers and others who knew her, that her pain would be remedied with surgery, that her mother was away for quite a stretch before she was killed, leaving her father her sole caregiver are all issues rarely if ever brought to public attention. I am only aware of this through the advocacy of the CACL and that work did not receive adequate distribution. There is a recent article out in the Journal of Criminalology and Criminal Justice entitled A Story of Justice and Mercy and I believe a book with the same title is about to be released and there needs to be some response to this. I fear Latimer will be cast again as a hero. So many thanks again Al for your work . Dana Brynelsen