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.
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.
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.
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.