APPENDIX "C"

Carter Part VII: Postscript

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C1    Introduction

C1.1   Much that is necessary to understand the ethical issues and controversies associated with end-of-life practices is absent from Part VII. While the judge's explanation of the law of informed consent is satisfactory, as is her explanation of the law concerning withdrawal and refusal of treatment,379 her discussion of the ethics of end-of-life decision-making was seriously deficient.

C1.2   Thus, when she stated in Part VII that there is no disagreement about the facts related to "existing clinical end-of-life practices and the understood legal and ethical justification for them,"380 this assertion cannot be accepted at face value, particularly in view of the studied vagueness that attends her discussion of palliative sedation. One reason for this may be that the evidence appears to have been focused on palliative care - the care of those who are dying - while the most spectacular controversies about euthanasia have concerned patients who are not dying.(C2.4.5)

C1.3   Moreover, her treatment of ethical justification (as opposed to legal justification) is slender indeed. Part VII contained virtually no information about factors that are considered in decision-making about withholding or withdrawing interventions.

C1.4   As a result, Part VII is likely to contribute to confusion and make it more difficult for conscientious objectors among health care workers to be heard with respect. Accordingly, this Appendix reviews Part VII with a view to providing information that was obscured by the ruling or left out of it altogether, so that readers will be better placed to understand the basis for objections when they arise.

C2  Patient autonomy: the distinction between legal and ethical evaluation

C2.1   In Canada, a competent person can legally refuse any kind of intervention or assistance, or require that it be discontinued, even if that will result in death. When the wishes of a competent person are known, they will be respected if he becomes incapacitated and unable to communicate.

C2.2   Incompetent persons are those who, by reason of age or disability, are unable to provide or withdraw informed consent to intervention or assistance. Such decisions must be made by a proxy or substitute decision-maker, typically a family member or relative defined by common law or statute.

C2.3   Health care workers commit an assault and are able to civil action and perhaps criminal charges if they provide intervention or assistance against the wishes of a competent patient, or, in the case of an incompetent person, against the direction of a substitute decision maker.

C2.4   The preceding explanation of the law in Canada is found in Part VII in the Carter ruling,381 but there was no discussion of the associated ethical or moral issues, even though, in Part VII, the judge claimed to be addressing ethical rather than legal questions.

C2.5   What was missing from the judge's account was an acknowledgement that a decision to refuse intervention or assistance or require that it be discontinued has a moral or ethical dimension, and that different religious, moral and ethical traditions may disapprove of the decision, even though the law does not. This can cause conflicts within families, between families and health care workers, and among health care workers who have different moral, ethical or religious views.

C2.6   Consider, for example, a decision by a competent patient to commit suicide by refusing food and fluids. It was acknowledged at trial that this cannot be prevented, but nothing in the representations of the parties or in the comments of the judge suggested that the decision might be morally or ethically controversial. In fact, the defendants argue that the law against assisted suicide is not discriminatory precisely because everyone can commit suicide in this manner (C3.9).

C2.7   No one disputes that this is the law, and that health care workers are bound by the law. But it is misleading to imply that the fact that health care workers comply with the law is evidence of an ethical consensus in favour of suicide, so that health care workers might reasonably be expected to help someone commit suicide.

C3    Withdrawal and refusal of assisted nutrition and hydration

C3.1   Nutrition and hydration are different needs and in a clinical situation should be considered separately, but for present purposes they will be discussed together because the ethical considerations relevant to withdrawing, withholding or refusing them are the same.

C3.2   Assisted nutrition and hydration: the methods

C3.2.1    Assisted nutrition and hydration (also known as "artificial nutrition and hydration" or "clinically assisted nutrition and hydration") include techniques for the delivery of nourishment and fluids to sustain life when a patient is unable to eat or drink, or when there is a significant risk of aspiration. They involve medical interventions like nasogastric tubes, percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy tubes inserted through the abdominal wall.382

C3.3    The dying patient

C3.3.1    A patient who is approaching death will naturally and gradually lose the ability to assimilate food and fluids, so that assisted nutrition and hydration will at some point serve no purpose and may even be contra-indicated. There is no dispute that discontinuation is justified in such circumstances, even if there may be some practical difficulty in determining whether or not the patient has reached this stage in the dying process.383

C3.4   Patients who are not dying

C3.4.1    If a patient is incapacitated, assisted nutrition and hydration may be instituted while his condition is stabilized and assessed, and maintained until the patient has recovered sufficiently to resume eating and drinking. This is uncontroversial. However, if recovery does not occur and the patient does not die from the underlying illness or injury, he will be dependent upon assisted nutrition and hydration to sustain his life. At this point, a conflict may occur between those who want to terminate assisted nutrition and hydration, and those who want to continue it.

C3.4.2    A patient who is capable of assimilating food and fluids and is not dying will not die merely because he is unconsciousness, whether as a result of an injury or illness or because of sedation. But withholding or withdrawing assisted nutrition and hydration will cause his death, and this is controversial.384

C3.4.3    Moreover, it not just “somewhat” controversial; it is highly so. There have been several high-profile court rulings over the last three decades that have led to the withdrawal of nutrition and hydration from patients who were not dying, all of whom then died.385 A number of the cases generated heated public debate; one precipitated a constitutional crisis in Italy.386

C3.5   Assisted nutrition and hydration: optional "treatment" or obligatory "care"?

C3.5.1   In Canada (and in many other jurisdictions), assisted nutrition and hydration are legally considered to be forms of medical treatment, and, from the perspective of the patient, the law considers all forms of treatment to be optional. Reflecting the primacy of the principle of personal autonomy, a competent patient can legally refuse any kind of medical treatment, even life-saving or life-sustaining treatments like assisted nutrition and hydration.387 It was acknowledged at trial that a patient cannot be prevented from committing suicide in this manner.388  In the case of incompetent patients, substitute decision-makers can legally refuse all forms of treatment on their behalf, including assisted nutrition and hydration.389  

C3.5.2   The law reflects the opinions of widely influential ethicists, but cannot be said to represent an ethical consensus, unless one discounts the views of those who disagree. Notwithstanding the law and the opinions of influential schools of bioethics, some ethical traditions consider assisted nutrition and hydration to be forms of care, not medical treatment.390

C3.5.3   The distinction is important, because those who make it typically insist that, unlike treatment, care is not optional; it is a duty one owes to others by virtue of our common humanity. While acknowledging that assisted nutrition and hydration may be withheld or withdrawn when it cannot be assimilated or is otherwise medically contra-indicated, they assert that it must be provided in other circumstances if it is ordinarily accessible and affordable.391

C3.6   Assisted nutrition and hydration as "extraordinary" or "disproportionate"

C3.6.1   Two further approaches can be identified. Some deem assisted nutrition and hydration to be part of an overall treatment regime that may include other medical interventions, like the artificial evacuation of bladder and bowels.392 Alternatively (or, in addition) they may consider assisted nutrition and hydration to be an artificial substitute for a failed organ system, analogous to a ventilator used by someone unable to breathe independently.393 On either view, refusal or withdrawal of the intervention could be justified by reference to the principle of proportionality.

C3.7    Carter and withdrawal/refusal of nutrition and hydration

C3.7.1    Madam Justice Smith must have been aware of the controversies concerning the withdrawal of assisted nutrition and hydration because she referred to the case of Tony Bland394 and to the cross-examination of Professor John Keown concerning it.395 Professor Keown’s point was that Bland was not dying and would not have died but for the withdrawal of assisted nutrition and hydration; the intervention was withdrawn with the intention to cause his death. The Christian Legal Fellowship drew this to judge’s attention in its written submission.396

 C3.7.2    Moreover, the judge quoted the evidence of Dr. Michael Klein, who stated that he had been required to stop both ventilator and tube feeding and hydration for competent patients who specifically intended to die by such means,397 and evidence from Dr. Rodney Syme that appears to describe the death of someone being killed by dehydration and starvation while under palliative sedation.398

C3.7.3    It appears that, in considering all of this, the judge overlooked the issue of intention and acknowledged only an ethical controversy associated with the withdrawal/withholding of treatment from a patient who had not provided informed consent or an advance directive.399 She considered this irrelevant, because the plaintiffs’ claims concerned only competent adults who were acting freely on the basis of informed consent.400

C3.7.4    The plaintiffs asserted that, assuming the requirements of informed consent had been met, deliberately causing the death of patients by dehydration and starvation was legally and ethically acceptable in Canada, so deliberately causing their deaths by other means should be equally so. Madame Justice Smith summed up their position:

In brief, the argument is that withdrawing a ventilator tube or maintaining a patient under sedation without hydration or nutrition are acts that will result in death, just as much as the act of providing a lethal prescription or administering lethal medications. To perform those acts, knowing of their inevitable consequences, is to hasten death. Similarly, refraining from life-saving treatment may result in the death of the patient, and is a passive form of hastening death. If those practices are ethical, then so is physician-assisted dying. ”401(Emphasis added.)

C3.7.5    Recall, on the one hand, the distinction between withholding nutrition and hydration from a patient when they are of no benefit or contra-indicated, and, on the other, deliberately causing the death of a patient by starvation and dehydration (C3.3, C3.4). This difference was ignored and obscured by the judge’s generic reference to “maintaining a patient under sedation without hydration or nutrition.”

C3.7.6    Withdrawing a ventilator tube, sedation, and refraining from life-saving treatment are different kinds of acts that may or may not be ethically justified, depending upon the circumstances and the ethical norms applied. Moreover, physicians are legally prohibited from providing or continuing treatment against the wishes of a competent patient (C2). Again, the judge failed to acknowledge the differences between the acts, the ethical and legal significance of differing circumstances, and the existence of conflict between ethical norms drawn from different sources.

C3.7.7    The defendant governments insisted that “legally approved end-of-life practices in Canada” could be ethically distinguished from physician-assisted suicide and euthanasia, but they did not assert that any “legally approved” practices were unethical.402 In fact, both Canada and British Columbia argued that committing suicide by dehydration and starvation was a legal option available to everyone.403 Neither suggested that this would be considered ethically unacceptable by anyone.

C3.7.8    More to the point, they did not assert that it was unethical for an incompetent patient who was not dying to be deliberately starved and dehydrated to death on the orders of a substitute decision-maker, a “legally approved” practice in Canada that may be considered medically appropriate, yet which remains ethically controversial.404

C3.7.9    Here the plaintiffs had the advantage, because the defendant governments would have been hard placed to distinguish the practice from euthanasia; that is how it was characterized by defendant witness, Professor Keown (C3.7.1). However, they could not identify it with euthanasia without acceding to the plaintiffs’ argument and generating significant controversy among those in the medico-ethical establishment who support the practice.

C4  Palliative sedation

C4.1 Madam Justice Smith offered the following explanation of palliative sedation:

In the context of palliative care, it is fairly widely accepted that when a patient is close to the end of life, and is experiencing symptoms that are severe and refractory (that is, resistant to treatment), it is ethical practice for her physician to sedate her and maintain her in a state of deep, continuous unconsciousness to the time of death, with or without providing artificial hydration or nutrition ("terminal sedation" or "palliative sedation")405

C4.2   Palliative sedation is unregulated, has not been judicially considered in Canada, and standards are under development. The judge notes that palliative sedation cannot be assumed to "hasten death" when provided to patients "in the final stages of dying," and is usually provided when a patient is within a week of death, "although it is not always possible to be accurate in such assessments."406

C4.3   According to the judge, the practice of palliative sedation "remains somewhat controversial,"407 and she elsewhere admitted that "some aspects of palliative sedation" were "possibly" problematic for Canadian ethicists and practitioners. However, she did not elaborate further.

C4.4    The controversy was not about palliative sedation per se: rendering a patient unconscious in order to provide relief from otherwise intractable symptoms. The controversy was about the use of palliative sedation as an anaesthetic during the withdrawal or withholding of food and fluids (assisted nutrition and hydration) from a patient who is not dying.408

C4.5    The two acts (sedation on the one hand, withholding/withdrawing nutrition and hydration on the other) are clearly distinguishable in terms of their structure and their potential consequences. There is no evidence that properly administered sedation can cause the death of a patient, but it is clear that depriving a patient of food and fluids will do so.

 C4.6    When a patient is committing suicide or when death is deliberately caused by dehydration and starvation, palliative sedation can be used to ameliorate and mask the effects of the process.409 This is unquestionably legal when the requirements of informed consent have been met, but, as the evidence of Professor Keown indicated, there was no consensus - let alone a strong consensus - that deliberately causing the death of a patient by dehydration and starvation is ethically acceptable. In these circumstances, the controversy is not about the ethics of palliative sedation, but the ethics of euthanasia and suicide (C3).

C5    Proportionality of interventions

C5.1   The distinction between ordinary and extraordinary (or proportionate and disproportionate) interventions relates to the principle that one is not ethically obliged to preserve one's health or life by recourse to extraordinary interventions or those that are disproportionately burdensome. Similarly, health care workers are not ethically obliged to provide extraordinary or disproportionate interventions. This principle is acceptable to many who believe that human life is sacred (or of inestimable value), but who also believe that life need not be preserved at all costs.410

C5.2   One of the most common applications of this principle is in advance directives or orders that specify "Do Not Resuscitate" (DNR) or "No Cardiopulmonary Resuscitation" (No CPR). These are often prepared for elderly people in frail health or those with terminal illnesses because CPR can cause harm (such as broken ribs), while research indicates that there is very little likelihood that CPR will have a positive outcome for such patients. In contrast, CPR is encouraged when there is a prospect of recovery ( such as a witnessed collapse) because the benefits outweigh adverse effects.411 The example illustrates another important point: that interventions are not categorized as "proportionate" or "disproportionate" without reference to circumstances.

C5.3   Evaluation of the proportionality of interventions and assistance is a ubiquitous feature of the provision of health care, so much so that in non-critical situations it may hardly be noticed. However, in critical care and palliative care the importance of and difficulties associated with this kind of evaluation are likely to be more pronounced: so, too, in the case of patients who are in persistently minimal consciousness. Much depends on circumstances of each case, and some degree of subjectivity cannot be avoided.412

C5.4   In particular, since the patient bears most of the burdens - and usually the most significant burdens - one would expect the patient's views about interventions and assistance to carry the greatest weight. In fact, in law, a competent patient (or substitute decision-maker) can refuse any kind of intervention or assistance, even those others would consider ordinary or proportionate. The legal basis for this is the principle of personal autonomy.

C5.5   The law notwithstanding, a broad spectrum of significant religious traditions and medical ethics derived from them hold that one is morally obliged to seek and accept ordinary or proportionate interventions and assistance that will preserve one's health and life, and that health care workers are obligated to provide and maintain such services.413 From this perspective, the decision of a patient who is not in the final stages of dying to refuse an intervention (or of a health care worker to provide it) may be seen to be blameworthy, as in the example above of suicide by starvation.

C5.6   Again, health care workers are expected to comply with the law. However, a health care worker who believes that a patient is wrong to refuse an intervention may conform to the patient's wishes, not primarily because of the law, but because that response is somehow respectful of the human person who is the patient. It may, in short, be an ethical response, and one that can be described as ethically correct.414 But such a response is not indicative of an "ethical consensus" about the patient's choice. This becomes clear when someone who has moral or ethical objections to a patient's decision is asked to do something to make it effective.

C6    Intention

C6.1   The subject of intention as an ethically significant element in decision-making was introduced,415 but the judge did not pursue it because, in her view, the focus of the Supreme Court of Canada's discussion of intention in Rodriguez was law, not ethics.416 The judge’s view that intention could provide the basis of a valid distinction in law but not in ethics is criticized in Appendix “B” as ahistorical and indefensible (B8.5.3).

C6.2   Here the focus is on the consequences of the judge’s failure to attend to intention.  For example, in summarizing the plaintiffs' claim that physician-assisted suicide and euthanasia cannot be distinguished from accepted end-of-life practices, she said:

. . .the argument is that withdrawing a ventilator tube or maintaining a patient under sedation without hydration or nutrition are acts that will result in death, just as much as the act of providing a lethal prescription or administering lethal medications. To perform those acts, knowing of their inevitable consequences, is to hasten death.417

C6.3   However, withdrawing a ventilator may not, in fact, result in death; Karen Ann Quinlan lived nine years after her ventilator was withdrawn.418 The judge cannot properly analyze the argument as she presented it because she inappropriately conflated two different procedures that can have two different outcomes.

C6.4   Note that her reference was to knowing the consequences, not intending them. The plaintiffs claim and that knowledge and intention were ethically equivalent in this situation; the defendants deny it; the judge failed to articulate a rational and coherent position on the distinction and the ethical significance of intention because she ignored it.

C7    Summary

C7.1   In Part VII of the Carter ruling, Madame Justice Smith failed to articulate and address ethical issues associated with the withdrawal/refusal of treatment or care and euthanasia/assisted suicide. She also failed to distinguish between palliative sedation used as a last resort to relieve intractable symptoms during the dying process, on the one hand, and used as anaesthesia for euthanasia or assisted suicide by dehydration and starvation on the other.

C7.2   The judge also failed to consider the distinction between legal and ethical evaluation of patient autonomy, and ignored the principle of proportionality and its application to refusing or withdrawing interventions. Further, she ignored other factors, principles or concepts that have a bearing on the ethical evaluation of refusing or withdrawing assisted nutrition and hydration, such as the nature of the intervention, the distinction between treatment and care and the related concept of moral obligation.

C7.3   Finally, the judge failed to provide a satisfactory explanation of her view of intention as it related to the ethics of end-of-life decision making.

C7.4   In sum, Madam Justice Smith cannot credibly claim to have identified a consensus to the effect that physician-assisted suicide and euthanasia are not ethically distinguishable from currently legal end-of-life practices. To her credit, she did not make such a claim.419