I said it wasn’t over.
I am referring to the Rasouli case which found its Supreme Court verdict handed down on October 18, 2013. Taking an extreme view, doctors still have no reason to treat Mr Rasouli, who has been in either a coma, a persistent vegetative state or is minimally conscious, depending on who you ask. The reason this is not over is that policy making will now silently shift to exclude more care or parts of care, shifting that financial burden to the patient or family during a time of medical crisis. Please note that people will not be denied care directly, but will not get aspects of care because they have not paid for it – like powerful anti-nauseant medication at $140 dollars a pill for chemotherapy patients.
This is a different idea than denying a sick infant permission to travel to the US to get treatment, and having that paid for by OHIP because it is more defensible than denying babies needed medical care. The optics of making someone pay for a pill are easier. I say that doctors or hospital administrators will find a way to shift more supplies and minor medications to the patient for payment or family. If someone can be marginalized for not paying for something vital like a pill, it is not withholding care; it is now a personal economic choice made in the name of autonomy.
If someone can be marginalized as not paying for something vital, it is no longer an ethical issue, it is a personal economic choice. That means that the person refusing to pay can be blamed for their suffering, removing responsibility and placing it on the person so refusing.
We have already seen how doctors do not have to tell you what information is placed on your charts, which means the doctrine of informed choice is not followed in practice, as much as it is presented as a professional and social ideal. So if the doctrine of informed choice is not followed – and it should be – is not informing someone of their rights in care breaking and ethical standard? I do not think this question has been covered legally yet.
It is clear from the articles consulted on the Rasouli case that the doctors wilfully ignored established safeguards for patients enshrined in Ontario law before the fact. The even told the family about their plan to remove care in writing. That means the decision to put Rasouli on a ‘palliative’ track was motivated by something other than money. It was also motivated by something else than dying, because at no time in the articles I read recently does it say that he was dying: Mr Rasouli had a post-surgical meningitis infection.
I would say that the doctors were using the Rasouli case as a test in law. If they knew they were breaking the law in not going to Ontario’s Consent and Capacity board – which they were told to do, not once but twice – they were breaking an established law and safeguard for their patient. That means they abandoned their patient.
They were probably thinking they could get away with it: Ms Rasouli was saying that she was a new immigrant with no Canadian experience and few contacts – this was in her interview on CBC the morning of Friday October 18, 2013. The doctors probably thought Ms Rasouli would be intimidated and not fight back. And once that demand for removal of life support was accepted from the doctors that became a precedent in practice, normalized in further cases. Unilateral removal of ventilation, or tube feeding, or water is now an established practice for patients – and patients and families do not need to be told or have it placed on their charts.
Turning to an analysis of the Globe’s article ‘Doctors denied power to cut life support’, a paragraph by paragraph analysis is revealing. ‘Doctors contend they would be forced to act against the obligation to do no harm’ goes one line in the article. If this were true, then we would not have infanticide, abortion or quiet euthanasia in practice. As well, does this now mean that treatment equals harm? By this standard, no treatment would equal good treatment. The fact such good treatment would save money for the hospital administration is not mentioned. Further the doctors say that the man (notice they didn’t humanize Mr Rasouli by using his name) – is ‘kept in a state of living death’. So their patient has been abandoned from care already. We are also not told the medical standard to determine that he is experiencing a living death, nor can Mr Rasouli tell us. The doctors have unilaterally decided this. There was no information on Mr Rasouli’s cognitive state, either at the start or at the end of this current saga.
It has been said that this case has ‘implications on allocation of scarce resources’ based on interpretation of the Health Care Consent Act. Notice that the standard of scarcity of care is raised: this means that, all other things being equal, cost of daily care for Mr Rasouli is a background consideration.
‘The public’s interest in having treatment of little or no value did not play into the decision, the court said.’ I think that this might be a bit of a stretch, but still that is what the majority decision explicitly stated in the article. It is also further said that the doctors did not argue this point, so they remained silent on costs of care. That means the doctrine of positive and negative economic statistics in care is not raised. So it wasn’t about the money by the doctor’s own admission, and if it wasn’t about the money, what was this removal of care about? Mr Rasouli was sick, not dying like Suhanna Marchand said on the CBC on Friday October 18: I have not found any indication that Rasouli was dying, just very sick after his surgery.
The article continues, ‘In practical terms, the ruling means doctors in Ontario, and the handful of provinces with similar systems, will need family’s consent before withholding life support from patients who cannot speak for themselves.’ No this does not; I have examples in my sources about doctors who acted unilaterally and made inevitable the outcome, regardless of what families were led to believe. And there is also the standard of slow code blues, wherein a medical professional goes through the motions of saving a life, making it look like they are putting an effort into the care, when they are not.
We have seen this in the baby Annie case in McIver, in the Quebec case in Smith, and in other cases in my sources. So again, what is the story about? I would agree it is about creating a euthanasia test case by other means. I would also say that the fact that this case blew up says that Mr Rasouli was not getting adequate care by observed result.
‘The minority (opinion) warned that the ruling puts too much power in the hands of patients’ families and places doctors in an untenable position.’ Again, not if the doctors don’t tell the families about care on the basis of confidentiality and a flexible standard of interpretation which we are witnessing in the Rasouli case itself. I was denied care on the basis of a doctor’s opinion that I was a meth addict and no testing was done. The minority justices go on: ‘Such an extension of patient autonomy to permit a potential to insist on the continuation of treatment that is medically futile would have a detrimental impact on the standard of care…’ Define medically futile, because all treatment is ultimately medically futile if humans are mortal. In addition, the detrimental impact on the standard of care would be that patients now have to be cared for as patients, not as statistics. And how would insisting on care be detrimental to care when that care was appropriate and necessary? I am thinking of the fact I was slow-rolled for pain management in 2012, and I was insisting on care then. And if care were not given, quality of life would suffer, wouldn’t it?
As well, we learn that a doctor’s letter to Ms Rasouli in 2011 informed her of the removal of care and the doctor’s determination to do it. In addition, she was challenged ‘If the family disagreed with the doctor’s decision…they could go to court and ask for a judge to stop them.’ The doctors were banking on the idea that the judge would not, opening the way to a challenge of the ruling. They also hoped that the family would not go to court but would accept the decision, creating a future precedent in care in practice to remove care. They also probably hoped the family would lose, thus also creating a precedent to remove care. The fact these outcomes also diminished care and made patients unsafe and bypassed the Consent and Capacity board was not mentioned in the article, of course.
It was also said in the ruling that the two doctors could still go to the Consent and Capacity board if they chose – which is what two courts told them they had to do first. So in other words, the doctors were trying to bypass the board in practice. They said that the board did not have jurisdiction in their case, specifically, in addition, by bypassing the board and going straight to court, the doctors also created a precedent in action and care which could be followed in future, removing the board as a player from the medical professional stage. Fortunately, this did not happen, as the Courts rebuked the doctors, and ordered them to follow established law.
I argue that this case was not about with-holding care. It was about creating a medical precedent for removing care from difficult patients and inadvertently punishing pushy families. Ms Rasouli has said that she demanded care for her husband, and stated specifically on CBC on Friday Oct 18 that the doctors and nurses were pushing her to remove the life support the first week after the surgery. Given that the doctors wanted to bypass the consent board, and the result would be that the board could now always be bypassed, I think the whole effort was to remove the board as an advocate for vulnerable patients and thus remove a level of protection – or safeguards, if you will – from families and patients under care. The latent result for this would be that negative statistics in hospital care would be minimized and the bottom line improved, and it would all be legal.
The article then concludes with a series of statements by ethicist Udo Shuklenk, who says at one point that the decision was, ‘… a common sense ruling. ‘I think the doctors overreached. There’s no reason, technical, practical, clinical – that they should have the final say in those matters’.’ Well and good, but to say that the doctors overreached leads us to ask what they over-reached past, precisely. Then Shuklenk hedges his bets and re-sets the power in the hands of ethicists: ‘their (the doctor’s) position that life support should be withdrawn is the right one, even though the doctors now describe him (Rasouli) as minimally conscious, an upgrade from permanent vegetative state’. First, the same doctors who wanted to kill Rasouli also upgraded his state from vegetable to minimally conscious, admitting in the definition that there was more life left in Rasouli. Indicating that there are going to be more battles over Mr Rasouli and his care, Shuklenk then says, ‘I think the demand is well within their (the doctor’s) rights and they were well advised to pursue it.’ Meaning that we are not out of this situation yet, and there will be more to come in future. It’s always nice to have something to look forward to…
The Toronto Star’s article agrees on the major points of this case, and also says, ‘whether Brian Cuthbertson and Gordon Rubenfeld will go that route is still up in the air’. So in other words, there will be a consent and capacity challenge, but this time there will be a cone of silence around it. The star writer also says, ‘Chief Justice Beverly McLachlin disagreed with the doctor’s position that they were not actually providing medical treatment by keeping the man on life support.’ Think of this: if life support is not treatment, doctors cannot be sued by families who want that treatment for their family members. One lawyer has said ‘…the story has just begun’ indicating more struggle for the family in the future. There are indications that the board will also be hearing more end of life cases – even though Mr Rasouli has never been described as dying at any point that I can find. ‘Hopefully the publicity from this case will educate families who have a loved one at the end of his or her life.’
Said another lawyer. The education will consist of learning that it might be futile to fight doctors when you want care, so you might as well accept it now…is that it? Another lawyer has said that it would be better for doctors to use the courts in future by implication. ‘I would encourage the doctors to use the process instead of acceding to family members’. The same lawyer says that ‘keeping brain-dead patients is ‘a waste of valuable resources and a form of torture’.’ If the patient is brain dead – which Mr Rasouli is not – how can they know torture? I submit that this last lawyer consulted had some standing in the case, although this was not revealed in the Star’s investigation. Two or three groups praised the court’s decision, EPCC, the Advocacy Centre for the Elderly and the ARCH Disability Law Centre, saying that patient care should be the focus. Jeane Meadus, the lawyer for the Advocacy Centre for the Elderly says, apparently,
‘Older adults and persons with disabilities are disproportionately affected by the court’s decision because they are often negatively stereotyped and can suffer health conditions that place them at risk of having end-of-life decisions made on their behalf…’ Meadus then is directly quoted, ‘This decision ensures that the autonomy, independence and dignity of older adults are less likely to be compromised in end of life decision making relating to withdrawal of life support.’ So either this is an end of life case, or an ending life case. In either case, it is good that the Courts chose to uphold the rights of vulnerable patients – for now.
As a bold correction, I would say that contrary to the statement made in the second last paragraph of the Star’s article that older adults and persons with disabilities are not ‘disproportionately affected’ by the court’s decision. They are protected by the court’s decision. The disproportionate affect is against those who want the disabled to be unable to access treatment. Remember the justices who said that patients and families have too much autonomy. They therefore want a return to paternalism of the worst kind.
Those slips of the keyboard are what create conflict later on and help the dying with dignity crowd accuse people of believing in myth, when in fact observers are accurate in their depictions of the distastefulness of with-holding care on a whim. So really, this case is about hostility toward the disabled and the vulnerable in medical settings and the sometimes disproportionate power that doctors and nurses can have over them; if this is not so, then why was this standard of removal of care applied to someone who has never been described by his family as ‘dying’? Something else is going on here, and we will learn of it eventually. Whether there is a body count attached to that knowledge remains to be seen. Let’s hope not.
Not to be outdshadowed, the Toronto Star praised the Supreme Court decision in an editorial on October 20, 2013, saying ‘The ruling reaffirms the right of patients and families to have their wishes heard…Issues of character, consent and hope must enter the equation too.’ Given that they said earlier in the year that everyone had the right to choose to end their life, one wonders where this editorial is going. The same editorial says, ‘Chief Justice Beverley McLachlin wrote for the majority that the term treatment covers more than just procedures that are of medical benefit. Well and good, but then they muddy the issue once more by concluding: ‘…this case should underscore the importance of everyone leaving a living will in which desired end-of-life treatments are thoroughly set out.’ [Toronto Star, ‘End of Life: The right to choose’, Oct. 20, 2013, A14]
Of that last quote from the editorial, there are two established practices which preclude fairness and consent in decision making: first, the notion that doctors can put orders on a patient’s chart without informing the family and patient (Silent DNR, anyone?) as well as the ‘slow-code blue situation in which ‘lifesaving’ efforts are simply going through the motions for show. Finally, there is one other technical problem: if the result is a dead patient (who was going to die anyway) is there any compelling law which requires doctors and staff to ‘really’ obey a written request? The answer to that question is simple: who has the social power in a medical relationship?
As an addendum, I did a cursory online search and did not find any evidence that the doctors in this case were affiliated directly with Dying with Dignity. That would have been an interesting element if they were...we have not heard the last of this case, and we will probably not see anything in the media as there will be a gag order placed on the proceedings from this point onward. Which is sad, because that case has already impacted care in Ontario to the negative.
1. ‘Doctors denied power to cut life support’, Sean Fine, Globe and Mail, October 19, 2013, A3.
2. ‘Doctors lose bid to end man’s life support’, Theresa Boyle, Toronto Star, October 19, 2013, A3.
3. ‘The Right to Choose’, Toronto Star, October 20, 2013, A 14.