It is then quite significant what has been happening this past year. Out of nowhere, there seems to be renewed interest in making applications to the CCB. I take this to be a positive sign, but there remain reasons for concern as well. Three of these cases were dismissed for reasons I won't comment on here (but you can read). Physicians should be learning from previous cases how to use the CCB so that they aren't taking cases unlikely to succeed – but that doesn't appear to be happening. Prior to Rasouli, physicians were successful* approximately 80% of the applications they filed wiht the CCB. After Rasouli, that number has fallen to roughly 50%. Of course, there could be more going on that physicians identifying the right cases and knowing how to bring them… (I will expand on this in a future post)
*The idea that an application to the CCB is a "success" has been criticized by some as a confirmation of the paternalistism at play in critical care units. They would point to the the CCB as a neutral 3rd party able to resolve of genuine uncertainty (where best interests are in question). The problem is that physicians tend not to use the CCB as a mechanism to "steamroll" families where genuine uncertainty exists. Careful reading of the cases brought forward demonstrates extreme restraint on behalf of medical teams, bringing applicaitons only in the most egrigious cases, after repeated and lengthy compromises along the way, where they feel patients are genuinely suffering for no demonstrable benefit.
1. Consent and Capacity Board decisinos that focus on end of life decision making
2. Consent and Capacity Board decisions that focus on admission to long-term care facilities
3. Our checklist for meeting ethical and legal obilgations in treatment decisions]]>
CMAJ. 2016 Mar 1;188(4):245-6. doi: 10.1503/cmaj.151205. Epub 2016 Jan 4.
Downar J1, Warner M2, Sibbald R2.
A decision regarding a no-CPR order cannot be made unilaterally by the physician. Where a physician is of the opinion that CPR should not be provided for a patient and that a no-CPR order should be written in the patient’s record, the College requires physicians to discuss this with the patient and/or substitute decision-maker at the earliest and most appropriate opportunity, and to explain why CPR is not being proposed. This discussion must occur before a no-CPR order can be written.
If the patient or substitute decision-maker disagrees and insists that CPR be provided, physicians must engage in the conflict resolution process as outlined in Section 8 of this policy which may include an application to the Consent and Capacity Board. Physicians must allow the patient or substitute decision-maker a reasonable amount of time to disagree before a no-CPR order can be written.
While the conflict resolution process is underway, if an event requiring CPR occurs, physicians must provide CPR. In so doing, physicians must act in good faith and use their professional judgment to determine how long to continue providing CPR.
While a no-CPR order should require consent in some instances, it seems inappropriate to extend that to all situations. In some instances, physicians believe it is not medically indicated to offer CPR to a patient – and thus consent wouldn't apply. A patient with metastatic cancer who is already intubated in an ICU is typically not a canditate for CPR, because it would be ineffective and only cause harm. Taking the disagreement to the Consent and Capacity Board may not provide the resolution the CPSO was looking for. The CCB is only able to ajudicate where consent is clearly at issue (ie. the physician has proposed a treatment plan). But more troubling is in the final paragraph where physicians are instructed to begin CPR (ie. disregard their clinical judgment about the ineffectiveness of such an action), but then only provide CPR for a period of time considered approrpiate by use of the same professional judgment. This almost sounds like an instruction to implement the "slow codes" that have been repeatedly dismissed as unethical.]]>
It is somewhat more challenging when patients aren't speaking for themselves as is often the case in both critical illness (adult ICU) and pediatrics broadly. In these cases, there are two scenarios where physicians are ethically obliged to challenge family/surrogate decision makers. The first scenario is where surrogates are making decisions that contravene wishes the patient had previously expressed while capable. This is more of an adult problem, though it should be noted that even young children may have opinions about their care, that while not legally directive, have great influence on the ethically appropriate care we provide. But the second scenario includes situations where treatments that are requested by family are either outside the medical standard of care, or are not in keeping with other treatment plans that are in the patient's best interest. Even here, physicians rarely challenge families relative to the reported incidence of perceived inappropriate end of life care.
In pediatrics, physicians long ago accepted the orthodoxy of 'family-centred care'. The problem is that family-centredness may sometimes be at the expense of patient-centredness. But how can a child's interests be separate from their family-unit? This is a significant problem for pediatric medicine, and one which we rarely take time to aknowledge. What we do know is that the courts have made it clear that a child's interests can be separated from those of their family-unit, for example in cases where families who are Jehovah's Witnesses, request that live saving blood products not be used to save their children. However, these cases are so rare, and more often we find reasons to support families and their values, irrespective of whether they should rightly be understood to be held by their children. But there are a handful of cases where medical staff have felt compelled to act, in the interests of their patient, over the interests of the family. These cases are rare, but are likely not occuring at the same rate as perceptions of inappropriate care (incidence of perceived inappropriate treatment at the end of life in pediatrics is currently being studied).
What do these cases look like? Well, for one, we hear about most of them through the media. It has become a standard legal tactic to appeal to the media and share stories of physicians who don't value life (and worse). But this is an inherently unfair tactic as physicians are publicly tried, though unable to defend theirselves against their acusers, who don't provide consent to share patient information. Nevermind that it is likely a legal violation for the parents to share that same personal informaiton if it is not in the childs best interests to do so. But the media approach works – and physicians are weary of challenging families even where they feel the alternative is to treat the child in a manner inconsistent with their best interests. What is needed is a legal order not to use the media to campaign against physicians, especially where there is a specific legal process designed to address the matter. It is in the interests of justice, that these cases are heard in private – though their lessons may be made public after the fact.
It isn’t just with technical, and legal jargon where language matters in healthcare. It is with our most controversial debates, including the one resurfacing around physician assisted death (following the historic Supreme Court of Canada decision last week). While I am proud of the court for reaching the conclusion that they did, the debate has suffered on both sides from appeal to emotional language that has imprecise meaning. I noticed a statement from the pro-PAD camp recently, that “there is no virtue in suffering“. This claim is interesting, because it attempts to universalize the judgement – coming from a group that also argues, it should be individuals who determine what quality of life, and manner of death are virtuous. While rare, I have encountered patients who felt suffering was a virtue, for whom experiencing their death was so meaningful, they refused many medications that would have relieved their obvious pain. Who am I to judge that for someone else, this isn’t virtuous? And on both sides of the debate, we see an attempt to own a universal interpretation of the phrase “dignity”. On this topic, I refer to Stephen Pinker’s excellent response to the Presidents Commission on Bioethics report on Human Dignity.]]>
In 2008, doctors at Sunnybrook hospital caring for a Mr.Douglas DeGuerre wrote a DNR in his chart when it was determined he was too sick to benefit from CPR. After his death, Mr.DeGuerre’s daughter, Joy Wawrzyniak filed suit against the physicians and hospital, and also filed a complaint with the CPSO. After considering the case, the CPSO determined the physicians had done nothing wrong, though acknowledged that there could have been better communication. Wawrzyniak then appealed this decision to HPRAB. In 2012, HPRAB concluded that the CPSO should reconsider their decision and make explicit reference to the question of whether or not the DNR order required consent from Mrs. Wawrzyniak. In the meantime, the Rasouli case was before the Supreme Court of Canada, and was poised to answer this very question (spoiler: it did no such thing). So the CPSO reconsidered the case, and for a second time found the physicians had done nothing wrong, in particular, by not seeking consent for the DNR. Undeterred, Mrs. Wawrzyniak again appealed to HPRAB. By now, the Rasouli decision had been released, and it should have been clear that it did not address the question of whether consent was required for a DNR in Ontario. The Supreme Court in fact went to lengths to ensure its decision was not construed so as to apply to cases with circumstances different to those of Mr.Rasouli. Amazingly, HPRAB in its second hearing of this case, referenced the Rasouli case and argued that it had in fact settled the matter regarding the need for consent to a DNR order. They instructed the CPSO to review and revise their policies on end of life to ensure they were consistent with the requirements of the Health Care Consent Act – in other words to ensure that consent was required for a DNR.
Since the release of the draft policy, physicians, hospitals, and other organizations have been organizing a response to the College pointing out their concerns in order to prevent the draft policy from becoming a formal position. The CPSO is taking feedback on the draft policy until Feb 20th, 2015.]]>
What I mean by key decision points are the decisions that lead to (a) admission to hospital at the end of life, (b) initiation of artificial feeding through the gut, (c) or tracheostomy/mechanical ventilation. What makes these decisions different than all others is their irreversibly. Technically, sure, we can send patients back home to palliate, cease artificial nutrition, or discontinue ventilation but practically speaking these decisions tend to be points of no return. Why? admission to hospital from Long-Term Care typically leads clinicians to presume that patients would want ‘everything’ in the absence of additional information. Often the patient is in dialysis or some other form of life support before anyone thinks to ask the question “did the patient want any of this?”. And regarding artificial feeding, I have seen far too many families protest that they cannot participate in a decision that would amount to “starving” their loved one to death (irrespective of the fact that their loved one had already been dying for weeks or more). And finally, while there are some very strong individuals who can accept that their loved ones will never leave an ICU environment, the success of critical care today too frequently leads to a false sense of hope. Everyone involved in these kinds of decision would benefit from hearing the patients perspective – in their voice and not through the interpretation of a husband, wife, child, or other family member in shock at the situation and only able to think about the ‘good times’ when asked how the patient might have chosen. So how can we ask patients, when they still have their wits about them, to consider these key decision points in a way that will be useful to us?
I think we need to ask people to consider more than “what matters most to them” and focus on scenarios that clinicians can actually speak to. Two scenarios come to mind. First, the treatment in question is going to be needed for as long as the patient is living. That is, there is no realistic prospect that the patient will return home, eat on their own, or leave the ICU. These are special circumstances that doctors will be able to reliably forecast (I am not saying that physicians can predict such outcomes with certainty as many families ask of them). The other scenario that must be considered is the identity of the patient him/herself. What if they will never again be able to make their own decisions, recognize themselves, or even be conscious? Identity is of vital importance to decisions as significant as are required at the end of life.
Where does this leave us? Well, I would envision asking patients, who have a life limiting illness or for whom death is a realistic probability in the few years ahead to consider what they would want in the following situations:
1. If transition to hospital meant that you would die there because you were too sick to return to home or hospice, but you would live weeks or more than had you not come to hospital in the first place, would you want to be admitted?
2. If you lost the ability to swallow such that it was irreversible, would you want a permanent tube inserted directly into your gut to prolong your life?
3. If you were sick enough to require mechanical ventilation, but it was felt that you would never recover to the point of leaving the ICU, what would you want?
And for each of these questions I would pose the question “would it make a difference if you were not able to recognize yourself? or if you were permanently unconscious?”
There you have it. I’m sure it is flawed – but these are the essential questions that I think provide greater utility to patients and clinicians caring for them at the end of life.]]>
Based on the cases that lead to conflict, we have drafted a list of questions that would be most helpful in preventing these “conflict” cases, had the patient taken the time to have answered them.