As I write this, a very important decision is being made by the Supreme Court of Canada. The court is deciding if doctors should have the right to withdraw care in cases where patients are unlikely to recover.
The Right to Die Movement is one that is quite active in Canada, particularly in British Columbia. On the one hand, patients like Sue Rodriguez and Gloria Taylor went to court demanding the right to end their lives at times of their own choosing. Both women suffered from ALS, an illness where sufferers remain lucid while their bodies slowly succumb to paralysis. It’s a terrifying prospect: ALS patients end up locked in bodies they can no longer move.
On the other hand, there are those who are worried about giving doctors too much power. Dr. Margaret Cottle, a palliative care physician in B.C., has some thoughts on this issue:
Recently, the Ontario Consent and Capacity Board gave doctors at The Ottawa Hospital the right to withhold heroic measures from an elderly patient. His name was Gustav Spindler and his daughter, Diana Ford, an engineer, felt her rights as a legal guardian were being undermined by hospital staff. The Board was called in to mediate.
Spindler had signed a mandate specifying he be allowed to die if he went into a vegetative state or an irreversible coma. The doctors felt this mandate, signed in 2010, should be invoked since Spindler’s condition seemed hopeless. However, Ford felt that the treatment her father received, in the aftermath of the car accident that hospitalized him, was substandard and thus contributed to creating his hopeless condition. It was a bit too convenient, she felt, that doctors could determine he was beyond help when they had not done much to help him in the first place.
For example, it was her opinion that her father “was given considerably less care than a younger person would receive under the same circumstances.” She also contended that her right to be the arbiter of when her father’s life had become hopeless was violated when the hospital started withdrawing care she deemed necessary. She was willing to move him to a long term care facility, she said, but only after doctors treated his pneumonia, an illness that eventually claimed him after he was transferred to the Jewish General Hospital in Montreal. She did not sign a DNR (a “do not resuscitate” order) and the withdrawal of care, in Ottawa, was carried out against her wishes.
In the cases of Rodrigez and Taylor, both women wanted to legally protect the individuals who would help them end their lives. They could not commit suicide by themselves, given their paralysis, and wanted their assisters protected. In Ford’s case, she wanted to honour her father’s wishes and wanted to do so by deciding exactly when her father’s condition had become irreversible and then acting on his mandate. In all cases, timing became the contentious issue.
Sue Rodriguez
With the Supreme Court decision that’s being made now, doctors are asking for the right to be the ultimate arbiters on the issue of timing. When it comes to end-of-life decisions, they believe they are the best judges.
I am not a medical ethicist, but I find this alarming. While doctors are disinterested parties – they are not related to patients after all – they can still make mistakes. Their scientific training makes them experts in medicine; it doesn’t make them experts in ethical decision-making.
A difficulty I had, while looking after my stroke-afflicted mother, was that my emotional state seemed to be used against me on an ongoing basis. It seemed that in the eyes of the hospital staff, my distress disqualified me as a good judge of my mother’s needs. I was on the receiving end of a lot of patronizing; I heard a lot of platitudes; I consistently felt managed. Apparently this was standard procedure at this hospital, and at times it meant being spoken to like an unruly five-year old, an experience that was both undignified and infuriating. Being outnumbered by the people doing it made it even worse.
If you’ve been following my blog, you will know that my mother suffered a stroke while she was in that hospital having a gangrenous toe attended to. On the day of the stroke, I made a heroic effort to have my voice heard, made a heroic effort to get someone, anyone, to take my concerns seriously. She had suddenly become unresponsive and I became worried, frantic, and then finally hysterical. My energies were wasted on a largely indifferent staff, however. They didn’t care and an intervention that could have spared my mother the paralysis she now suffers from never happened.
Diana Ford, when I first read about her, was characterized in the press as an unreasonable woman who was demanding that her elderly father be kept alive by all means. A connection was made between her demands and the fact that her father was a Holocaust survivor. This suggested her decision was driven by emotions larger than the situation at hand, suggested she was using history to support an unsupportable decision.
Gloria Taylor
I remember reading the assessment of her character made by one of the doctors involved and sensing his satisfaction that the Consent and Capacity Board had sided with him. The photo accompanying the online article showed a white-coated doctor looking very pleased with himself. It made me angry because I have no doubt that I too was characterized as “unreasonable” by some of the staff attending my mother. Unlike Ford, however, I signed a DNR. It was reversing it that created the problem.
The day after my mother suffered the stroke was the day the DNR papers were placed in front of me. I remember my surprise because I wasn’t expecting them and it seemed that on one count at least, the staff at the hospital were being uncharacteristically efficient. Moreover, the doctor who presented them assured me that my decision could be reversed at any time. I had no idea whether my mother would recover, but I knew I did not want her kept unconscious and alive by artificial means. Letting her go, under those circumstances, seemed sad but humane.
Difficulties arose, however, when my mother regained consciousness. Once she did we had a conversation that went something like this:
Me: Mom, you’re in a lot of trouble. A lot of things are going wrong with your body.
My mother: nodding.
Me: Mom, they asked me to sign a paper. They want to let you die because you’re so sick. I signed it because I didn’t know what was going to happen. We weren’t sure you would wake up.
My mother: nodding.
Me: Mom, what do you want me to do? You are going to lose your left leg. Do you want to live?
My mother: nodding.
Me: What do you want me to tell them?
My mother: I’m not ready to go.
And those words were what I took to the doctor when I asked to have the DNR reversed. And it’s those words that were ignored when I tried, with considerable effort, to stop the momentum my signature on those papers had started. I should add here that four years later, my mother is alive and still has the leg I was told would have to be amputated. And she is still getting up to her old tricks. The staff at her nursing home often regale me with tales of her droll sense of humour, her pithy observations about life, her habit of expressing gratitude.
Gustav Spindler
I’ve never met Diana Ford, but I feel some sympathy for her struggle. I too felt my mother received less than stellar care and that ageism was to blame.
In Part 2 of this article, I’m going to discuss the Liverpool Care Pathway and talk a bit more about the process of reversing my mother’s DNR. The Liverpool Care Pathway (LCP) is a care-withdrawal protocol and is currently the focus of much controversy in England. I assume the rights Canadian doctors are seeking are similar to the rights English doctors and nurses have now.
Watch out for Part 2, “The Right to Live,” tomorrow.
Here’s the link: http://ireneogrizek.ca/2012/12/27/5638-the-right-to-live/
Tags: Right to die, assisted suicide, palliative care.
1. My email at can be used to request the petition that I have currently going in order to prevent abuses by the medical and judicial establishments to take place against the elderly or the handicapped patients. Please feel free to use it and to request my Petition so you can sign it.
2. In my father’s case, I had arranged for him to be transferred out of the Ottawa Hospital and into a different Hospital in the area twice, but I was refused both times by the attending physicians. When I saw how they were not attending to him when he was so ill that he became septic and comatose, I told the staff that I wanted to take him home. The nurses filled out the paperwork and the doctor refused to have the discharge papers signed when they were ready, after he had refused to let my father be transferred into a different Hospital. This happened in the March 2012 time frame. These refusals to let him go were followed In April 2012 by the doctor, (without previously even as much as showing me his proposed plan of care that he claimed I had not agreed to, leave alone discussing it with me or justifying his position), applying to the Consent and Capacity Board to have my father’s feeding tube removed in such way as to let him starve and dehydrate to death but did not specify any reason. Vegetative was never mentioned, not in conversation, not in writing, not in his chart and not by any medical consult or specialist, not till two months later in the Board Hearing without any warning. It was an ad hoc improvisation made up on the spur of the moment (most likely at the doctor’s lawyer’s suggestion who was loaned to the doctor by the Ottawa Hospital only two days prior to the Hearing- a last minute decision on the Hospital’s part to ensure the desired result).
3. The reason my father was listed as a Holocaust survivor was because in the Hearing I tried to clarify what I thought were a few very essential points:
a) even under the most horrific, barbaric, degrading, humiliating, physically and emotionally painful of circumstances, my father chose and wanted to live (4.5 years of forced labor camps did not dampen his enthusiasm and insatiable desire for life)
b) that he was an extraordinary human being and that I had found out from a book that was published without his knowledge by other Holocause survivors that he had organized the barracks of young people to do double shifts and to go work instead of the elderly people as well as for their own shifts in order to save the lives of those who were more frail and more likely to die because of the brutality that they were treated with as well as because of the extreme physical effort required to complete the tasks demanded of them (he, unlike the Ottawa Hospital doctors respected the elderly and did not think they should be trashed because their life expectancy was shorter anyhow, on the contrary he placed his own life at risk to save them)
c) that he chose to come to Canada for its democratic values, values that my father embraced and held in high esteem
d) that when we signed the power of attorney he was totally opposed to the clause stating that under certain circumstances (such as vegetative) he would not wish to be kept artificially alive, that it was a standard clause in a standard document the lawyer had prepared for him in a province where the doctors did not override the power of attorney, but that it was late in the day and I had to return to Ottawa and the car was out of parking money and the typist had gone home and so I promised him I’d come back to Montreal and we’d redo the document and I asked him why he was so worried and he told me that I don’t know what he knows and I asked him what that was and it was the first time he talked to me about the Holocaust and he told me that doctors can be the biggest criminals and that they destroyed hundred of thousands of German children during the war (see the T4 Program) because they wanted to save money for the war and that it was the doctors who developed the gassing method of killing because they had tried to starve the children to death and all mentally or physically handicapped people later on but that this was too slow for their liking so they started to look for other methods like injecting them in the heart with poison and then gassing them to death. My father found the doctors of the third Reich to have been the single group most responsible for the death of millions of people and he feared the doctors to be given right of life or death over their patients (in hindsight, it turns he was completely right). We never got a chance to modify the document before his accident.
f) that if the Board would approve the doctor’s proposed plan to have his life terminated, it would feel like what the Nazis were unable to accomplish in the 4.5 years of forced labour camp, the doctors at the Ottawa Hospital were able to finish off.
I did not know about the T4 till after the doctors came up with their ” proposed plan of treatment”. That’s when I looked it up and found out and it all matched perfectly.
You are quite right that the Holocaust argument, taken out of context, was made to sound like I was hysterical and irrational. It was also made to sound like “These Jews who are always whinig, trying to get our sympathy through laying down blame and holding guilt feelings over our heads! Didn’t they already do that enough till now? When will it ever be enough?” This is how it sounded to me because it was not explained at all.
Many parts of the articles in the paper were wrong or sounded bad out of context. That was not the only one! I have those articles on line if you want them but they come with my corrections that I included. A large part of them are untrue or misrepresenting the facts.
4. 24000 people die each year in Canada due to medical errors and this does not include medications or the people who are harmed without being killed due to medical errors. The number is the equivalent of the crash of three different jet planes a week with a complete death of all passengers on board.
5. One out of two clinical diagnosis of persistent vegetative state are wrong according to the findings in the New England Journal of Medicine (43% to be exact)
6. In my father’s case, they had not observed him for longer than 15 minutes before diagnosing him, they did not have any neurological tests confirming this diagnosis, nor did they have him evaluated by a specialist.