Chapter 2: Caring for Patients
- CODIFIED ETHICS TO LAW AND POLICY
- RESPECT FOR AUTONOMY
- CAPACITY TO DECIDE
- INFORMED CONSENT
- PRIVACY AND CONFIDENTIALITY
- INVOLUNTARY TREATMENT AND QUARANTINE
- PATIENT SURROGACY
In any discussion of bioethics a good place to begin is at the beginning: with a discussion of the relationship between the players or stakeholders. In the most fundamental terms, health care involves providers (and the institutions they are affiliated with), and health care consumers. The “doctor patient relationship” is the term of art often used in bioethics to capture that relationship which exists between care providers and patients.1 The doctor patient relationship, as a concept, is integrated and woven into the fabric of ethical theory—the relationship between a health care provider and his or her patient is the essence of the rich bioethical theory that has been evolving since the 1960’s and 70’s. Much has been written about intricacies of the relationship between a health care provider and his or her patient: defining what it means to respect patients, balancing principles such as autonomy beneficence and distributive justice, and the opinions and arguments that support or enhance these understandings. This text embarks with an assumption that the reader has a basic understanding in many of these topics. In keeping with the scope of this text, this is not a discussion of moral theory and the principles of ethics, but rather an examination of the concepts that derive from these such as informed consent, capacity, truth telling, and confidentiality. More accurately, it is an examination of the manifestation of the doctor patient relationship in Canada, and it is a discussion of these derivative concepts in a Canadian context. This chapter is less about the doctor patient relationship per se, and more about how ethical concepts shape the way Canadian health care providers relate to their patients. That is, it is a discussion about how these ethical concepts are actualized and how contentious issues are managed in the Canadian health care system. Many other topics follow from this initial contemplation of the provider-patient relationship, and these topics will resurface in the remaining chapters of this text.
A small digression is necessary; a digression which may enhance understanding by introducing a theme which frequently arises in this text, the comparison of Canadian and American experiences and understanding. Throughout the developed world—and for the sake of this discourse, in Canada and the United States in particular—there is some broad consensus and homogeneity of moral understanding. American and Canadian cultures have been shaped by similar philosophical and religious input. Americans and Canadians are of roughly the same socioeconomic make-up and are governed by well functioning democracies, and law and order administered by tightly run legal systems that are relatively free of corruption. Canada and the US are similar in the very fact that they are culturally diverse. But despite all their similarities, these two countries are different in many significant ways, and although proximity and socio-political similarity often invites an assumption of congruence in many other spheres, it is important to recognize and garner an understanding of the salient differences. These facts, too, are not the focus of this chapter but must be acknowledged at the outset because the Canadian bioethics climate has been largely shaped, informed, and has evolved alongside the American bioethics scene. While this is true, one must not make assumptions about the nature of Canadian bioethics as being necessarily or entirely congruent with American bioethics, there are differences, some obvious and some not, but where pertinent, they will be revealed herein.
Cultural values, law and government shape the bioethics discourse and practice of a nation, and it is much more these considerations that contribute to differences between nations than differences in the moral makeup of nations. Canada has its own cultural values and identity, and its own governance, and these do distinctively define just how a health care provider is to interact with his or her patient. A number of the elements of this concept will be discussed. The manner in which health care providers are to behave is set out in codes of ethics and an examination of these will be briefly discussed. The principle of respect for autonomy in bioethical theory is quite similar in many nations but in legislation and in the governance of health care this principle is interpreted uniquely by each nation; some of the similarities and peculiarities of the Canadian system will be discussed. Flowing from this unique interpretation of autonomy come some important differences in the way informed consent is understood, the way a patient’s decisional capacity is conceived, and the way in which surrogate decision making is performed. These topics will receive detailed treatment.
CODIFIED ETHICS TO LAW AND POLICY
A reasonable first step in understanding the relationship between care providers and their patients is an examination of codified ethics and the formal legal instruments that govern such relationships in Canada. That is, a sharper understanding of the ethics of caring for patients could be had by first understanding the formal instruments and documents that are intended as explicit guides and rulebooks to direct care givers in behaving ethically.
It is difficult, at best, to codify ethical behaviour. Generally speaking there can be two approaches: a code can be effective through its breadth by being comprehensive, in depth, and intricate; or it can be broad in its simplicity in portraying very robust general terms. A comparison of the American Medical Association (AMA) Code of Ethics and the Canadian Medical Association (CMA) Code of Ethics2, 3 demonstrates this point. The AMA code is a 438 page document (in its latest iteration at the time of this writing) that is arguably the most comprehensive professional code of ethics in existence. It is the latest version of a document that originated in 1847 and undergoes frequent and revision by the AMA Council on Ethical and Judicial Affairs. It is an intricate and comprehensive document with prescriptive advice on all aspects of medical care and doctor patient relations. It is intended, and indeed used as, a resource for bioethical information far beyond the confines of the US and is a compilation of current bioethical thought, research and policy statements.
The CMA code is a much different affair. What its four pages lack in volume they make up for in breadth and scope. It is a very general document that intends to represent the core values of the CMA, and an attempt to instil these in its members through its 54 points. The CMA Office for Ethics publishes many Policies and Guidelines, available in print and online.4 These are frequently updated and rewritten to reflect the latest research and legal/political climate. These guidelines offer statements and positions on issues such as abortion, pandemic ethics, and physician assisted suicide. Ultimately this collection of documents represent what is encompassed in the one larger document put out by the AMA. Within Canada the medical profession is roughly divided between primary care physicians and specialty services. The latter are represented by The Royal College of Physicians and Surgeons of Canada and ethical guidance issues from their extensive set of policy statements and guidelines. These pertain to such things as privacy policies, conflict of interest guidelines, and continuing education initiatives. The College of Family Physicians of Canada (CFPC) is playing an ever increasing role (for over a decade, new general practitioners are required to be accredited by the CFPC) in the oversight of primary care physicians and their concerns. Their by-laws adopt the CMA code of ethics as their own.5 For all intents and purposes the terms general practitioner (GP), family doctor, and family practitioner (FP) now mean the same thing.
Codifying ethical standards is not a practice unique to physicians. The Canadian Nurses Association has a comprehensive and frequently updated document which provides significant theoretical context to the practice of nursing in Canada but also provides practical advice for dealing with ethically charged or difficult situations such as disaster situations, dealing with students, dealing with conflicts of conscience, and dealing with unethical behaviour of colleagues.6 Similarly, in our age of enhanced ethics consciousness, codes of ethics abound for physiotherapists, chiropractors, audiologists, dentists and every conceivable health care provider.
The Canadian universal health care system imposes a certain minimal acceptable standard on health care providers within the system, and considerable collaboration between the professions must occur. Significant statements of health care policy are conceived in documents such as the Joint Statement on Preventing and Resolving Ethical Conflicts Involving Health Care Providers and Persons Receiving Care.7 Policies dealing with issues outlined in the rest of this book are often informed by representatives of various professions and consistent with their respective ethical codes of conduct.
Codes of ethics reflect the socio-political structure of Canada but stand apart from and are constructed outside of the health governance system. This system was introduced in the first chapter and it was seen that health care oversight is accomplished at the national, provincial (territorial), and regional level. Each level has its own legislation and policy. Codes of ethics, in contrast to law and policy, are something of an intermediary between philosophical theory, and the protocol and procedural concern of law and policy—it is a transition from moral theory to normative ethics captured by law. (Normative ethics being that branch of ethics concerned with questions like: “What should we do?” and “How ought we behave?”.) Codified ethics are important in relation to law and policy in Canada inasmuch as they inform law and policy in a fundamental way.
That the codes inform law and policy has much to do with the fact that, in Canada, the health professions are self-regulatory. Each province contains medical, nursing, and allied health care associations that in turn have legislation that empowers them and sets out their mandates. As was noted in Chapter 1, the health professions acts (and they usually are titled in this manner) in the various provinces define the various medical and allied professions and provide the legislation to govern and guide health care in the province or territory. Ultimately, the professions are self-regulatory: they set the rules as to the input (who qualifies as a suitable member) and the output (how the services they provide are monitored and regulated), and this is of particular importance to the general public which has little influence on the regulation of these professional bodies.8–9 The provincial institutions, such as the provincial colleges of physicians and surgeons, adopt by-laws that spell out in legal terms the ethical code of the Canadian Medical Association, but in accordance with the health profession act of its region. It is this manner that ethical principles trickle down from theory, to codified law, to the law and policy that governs just how health care providers care for their patients.
RESPECT FOR AUTONOMY
The introduction of bioethics as a relevant concept in the 60’s and 70’s was made on the basis of an appeal to basic ethical principles—those written or described condensations of common moral understandings. The growth and development of bioethical theory, especially in North America, but arguably by extension in most of the industrialized world, has been largely along the lines of Principlism. The Belmont Report of 1979 was one of the first, and still one of the strongest examples of Principlism. It cited as its core principles Respect for Persons, Beneficence, and Justice.10 This report is respected the world over, but has been highly influential in the US and in Canada as a concise statement of fundamental ethical understanding (much more will be said on this in Chapter 8 which deals with Research Ethics). The popular (indeed, almost dogmatic) writings of Childress and Beauchamp and their ethical principles of Respect for Autonomy, Beneficence, Non-maleficence, and Justice have informed much of the world in the introduction to bioethics through several editions of The Principles of Biomedical Ethics.11, 12 These authors, and authors in the tradition of Principlism, have also been very influential in shaping the bioethical climate and medical practice in Canada.
While it is well beyond the scope of this text to elaborate on the nuances of any moral theory, or normative or applied ethical approaches, it must be noted that while Principlism enjoys favour in Canada, this is not to the detriment or disparagement of other approaches. Feminist ethics, virtue ethics, narrative ethics (etc.), all have an important role in instructing and guiding bioethicists in Canada (as elsewhere) and their merits and values are exploited in appropriate circumstances in the biomedical realm. The notions of respect for autonomy, the desire to maximize beneficence and minimize maleficence, and a sense of the importance of justice, are not peculiar to Principlism and these concepts can be viewed and understood through many bioethical lenses. To view Respect for Autonomy (writ large) as a product only of Principlism, is to do a disservice to other ethical theorists and theories, and was never the intent of its proponents. But respect for autonomy as a principle is still a useful way to analyze key concepts in the “doctor-patient relationship”. Respect for autonomy is the place from which derivative concepts issue forth—consent, paternalism, surrogacy and the other concerns of this chapter can be viewed from this starting point.
Using the principle of respect for autonomy as a point of departure in this discussion is warranted on other grounds: respect for autonomy is often viewed in Canada as a principle of primacy. Again the debate over the rightness or appropriateness of this, will be left to ethicists and the writings of other texts, but it does have more bearing than other principles on many of the issues that surround the relationships between health care providers and their patients or clients.13 Much could be written on an elaboration of precisely why autonomy should enjoy particular favour among Canadians, but in simplistic terms it is a principle that captures the values of any free, democratic, liberal and pluralistic (multicultural) society. And Canada is certainly all that. That one should be free to exercise one’s will in living his or her life is fundamental to Canadians, and what flows from that are certain bedrock notions of how citizens should be treated, and what can and should be expected of a society and government that cares for them. While all the principles are certainly incorporated in the beloved Canadian universal health care system, autonomy is often front and centre.
CAPACITY TO DECIDE
Before moving to a discussion on issues that attach to respect for autonomy (such as informed consent) and issues that attach to paternalism (such as involuntary treatment), it is necessary to get clear on a topic that stands between them: namely the capacity to decide, which is something of a line or threshold between rightful respect for autonomy and the imposition of paternalistic measures. But capacity, as will be discussed below, is a fluid property and the threshold it represents is often a grey area. It changes with time and circumstance for every unique individual. There are those who have never had capacity and never will (severely disabled persons for example). There are those that have never had capacity, but soon will, such as children. And there are those that have had capacity but lose it, such as an unconscious patient or an elderly demented patient. Each of these, and every scenario in between, has their own attendant ethical considerations.
Before going further in describing how and where the issues are generated, it is necessary to define and describe these terms. In Canada “competence” is a legally defined term that refers to a person’s ability to exercise autonomy over certain aspects of his or her life such as managing finances, or making health care decisions. These are matters decided exclusively in the legal realm, ultimately by judges. Capacity is a medical term (albeit a medical term which is often used in legal situations) which refers to a person’s ability to make decisions about his or her life and his or her medical care. In the US, the UK and Canada competence is a more solid pronouncement that has a threshold; one is to have one’s wishes respected if one is competent in that realm and the question of competence is firmly established as present or not. Furthermore, this pronouncement is made on the foundation of, and with the force of, the governing law.14 Capacity, in contrast, is fluid; it changes with time and circumstance such as level of consciousness, and progression of illness etc. Capacity can increase or decrease and be present or absent at different times, which feeds back on the claim discussed below, specifically that consent is an iterative process that needs to be continuously sought and reasserted.14, 15 It needs to be stressed at the outset that the view of the courts is that competence and capacity are assumed to be present and that in their assessment, the burden is in proving they are not present, not in proving they are.
Capacity is integral to the giving of informed consent or to refusing care. Capacity is assessed by a qualified health care professional and, while there are several clinical tools to aid in this assessment,15 (discussion of these falls outside the scope of this paper), there is no strict legislation or codified statement on precisely how to go about it. Capacity assessment remains largely in the realm of health care providers, and relies on their skills and knowledge and results in an opinion. If a patient has an understanding of the treatment proposed and the consequences, risks and benefits of treatment (and non-treatment), and, furthermore, the person can reason and express a choice, that person is said to have capacity.
Two important points emerge from the above paragraph. The first is that there is no set standard for precisely who is “qualified” to make the capacity determination. While it is generally the case that those who weigh in on such matters have some experience in making capacity assessments (elder care specialists, paediatricians, psychologists, psychiatrists etc.) there is no guarantee of this. Second, the capacity assessment is an opinion and not a legally binding assessment. A judge makes assessments of competence (often used interchangeably with capacity in this instance) based on these opinions; capacity is not established legally by a physician’s assessment alone.16 Some regions in Canada have tried to address some of the issues that flow from this, for example Ontario has enacted a Health Care Consent Act which enables the Ontario Consent and Capacity Board. This board conducts hearings under the Health Care Consent Act and under the Ontario Mental Health Act when there are disputes or concerns about capacity assessment. Such a board is made up of persons recognized as “qualified” (doctors, lawyers, and laypersons sit on the board) and its decisions have legal power that go beyond opinion of a capacity assessment made in an institution or health care facility.17 Other provinces rely, to greater or lesser degrees, on the legal system and the courts to clarify and resolve capacity issues.
Regarding capacity, there are some relatively non-controversial scenarios. For those that have never had and never will have capacity (for example a profoundly disabled person), a reliance on the care givers and the state are a given. For such persons, their limited ability to exert their autonomy or have insight into informed choices about what will benefit them, removes them from the realm of a discussion about consent and other autonomy based concerns. They are squarely in the realm of a justified and benevolent paternalism—a paternalism that Canada can provide through an extensive social welfare system, and a universal health care system overseen by a sound and democratic system of government and a fair system of justice. The same applies to those who have lost capacity and will never regain it, such as the profoundly demented or cognitively impaired. While the delivery of this care will continue to be praised, criticized, and changed both from within government and from outside by socio-political forces (the media, the public etc.), the point is that the Canadian health care system and social welfare system, in principle, is designed to accommodate those who lack capacity.
Controversies and ethical issues are generated in transition zones. In this case, transition zones exist in two types of persons: those who are gaining capacity and those who are losing capacity. It is in these grey zones that ethicists and law and policy makers struggle to find clarity. For those who are gaining capacity, children, this is largely a debate about when children can give informed consent or refuse treatment and this will be discussed in more detail in the next section. Because children not only lack capacity but also lack cars, estates, money, jobs, and dependent family members, many of the other issues that surround capacity do not come to bear on this discussion. Children develop along fairly predictable and linear progressions so it is possible to make fairly robust and consistent (yet often still contentious) pronouncements about their capacity to exert their autonomy in such things as voting, driving, consenting to sex, and as will be seen below, consenting to manage their health care.
In Canada children are felt to possess a “sliding scale” of capacity. This has been the opinion of the Canadian Paediatric Society for many years and has been part of their policy statements on capacity and consent to treatment.18, 19 In this sense, capacity is something that emerges or evolves with time. It is also seen as something that is assessed in light of the gravity of the impending situation. The decision must be considered relative to the size of the problem—the “proportionality” (a word often used in capacity debates) of the decision factored into an analysis of the capacity, or lack thereof. In this sense a more sophisticated, or proportionally higher, level of capacity (or competence) is required when the stakes are higher, such as in making serious treatment decisions.
The way forward, toward robust and definitive guidelines is difficult. Some scholars believe that the question of capacity is amenable to empirical probing20 but the debate in the literature is far from conclusive as far as making definitive recommendations. Some look for clarity on purely rational grounds, and by appeal to philosophical arguments that parents either do or do not have a legitimate right to act and decide on behalf of their children, and that paternalism is morally justified to greater or lesser degrees. Here too, the solution is far from clear. The complete arguments, both empirical and philosophical, cannot be aired herein, but suffice it to say that Canada is no closer than any other nation in resolving the issue of precisely when children and adolescents develop decisional capacity. That being the case, given the uncertainty of this state of affairs, the notion of evolving and situation specific capacity is as good as any stand on the matter. The guidelines set out by the Canadian Paediatric Society, and the notion of sliding scale capacity, seem to offer the most promise as a methodological solution for problems as they arise. It is a methodology that is turned to not only when health care providers care for their patients but also when these problems enter the legal realm, as will be seen in the next section.
The emergence of capacity is one grey zone that spawns bioethical controversy, the other is declining capacity. Capacity is situation specific and more will be said on this topic as it pertains to the other broad topics of this text in the context of their respective chapters, such as end of life considerations or consent to participate in research. The degree to which society imposes itself on these situations is proportionate to the degree that the situation imposes itself on society. Deliberations on capacity have important societal implications in practical areas such as fitness to drive (for an elderly person) or the age at which persons can begin taking health risks such as smoking, and here there is specific and strict legislation in these realms in every province. Narrowing the scope, capacity assessments also impinge on several aspects of a person’s family and interpersonal life. Hence, there is legislation about wills and the disposition of one’s estate, and there is law and policy regarding one’s personal concerns and health care considerations (such as advance directives, patient surrogacy etc.). Finally, there are ways that capacity, or a lack thereof, affects people on a more strictly personal level such as with issues of intimacy or sexuality, or in immediate health care concerns (accepting or rejecting specific treatment). For these, there is much less in law and much more in theory to act as the guide, and often these things are not decided or directed by law but in conversation or consultation with health care providers and family members.
The thresholds of gaining and losing capacity are certainly ethically charged, but there are capacity related questions in other areas as well. As was mentioned above, capacity is situation specific and it is possible that a person can be in dubious possession of capacity at any point in their lives. Questionable capacity can occur owing to a lack of understanding (poor cognitive apprehension or even language comprehension), or due to duress (those being threatened or coerced, or those experiencing situational anxiety), or due to intoxication or illness (including those held in the grip of an addiction). These situations are addressed less by law and policy and more by the competent assessment of health care providers who are guided by their training and who adhere to codes of ethics and regulatory structures. Once more, the bioethical theory that informs these processes is not peculiar to Canada and is subject material that falls outside the practical concerns of this text. One of the most important places where questions of capacity arise is in the realm of mental health issues. Indeed capacity is largely a cognitive concept and lack of capacity, or insufficient capacity, is often due to cognitive impairment. The practical concern here is the proper means by which a person can rightfully be relieved of his or her autonomy and this will be discussed below.
A) BACKGROUND AND THE CONCEPT OF INFORMED CONSENT
Canadian values, and Canadian notions of informed consent, resonate with fairly standard bioethical theory and teaching. Respect for autonomy is often seen as inseparable from a notion of “respect for persons”. The Belmont Report, as seen above, names this principle first and uses it as the foundation for the requirement of informed consent. Veatch also refers to the duty to respect autonomy and the duty to be truthful to patients, as “respect for persons”.21 In Canada these notions are adequately captured. It is essential not only to obtain consent for treatment, but as autonomous agents, Canadians have a right to informed consent. They have the right to make choices based on honest, credible, and complete (relevant) information from their health care providers. The Canadian health care system is largely driven by the needs of Canadians. As per the concepts introduced in Chapter 1, it is a system based on equity; the fair distribution of health care according to the needs of the consumer. But in filling these needs, consent is still essential. Needs are not met by standard generic responses, but tailored according to the requests and formatted to the services available; finding health care solutions is a process. And for this reason, consent too is a process, it is situation specific and it is updated or reissued (or, indeed, revoked) as the situation demands.
Consent is something that must be obtained before medical care can be given. In emergency situations there is no requirement for formal consent.22 In almost every other situation consent is mandatory—it is fundamental to the Canadian health care system. The Canadian Medical Association stipulates this in the code of ethics, the College of Family Physicians of Canada and the Royal College of Physicians and Surgeons (the professional association for Canadian specialists) both demand it.23 But this requirement is also captured by law, and on this front it is largely a provincial affair. Most provinces have enacted legislation that explicitly requires informed consent.24 These health care consent acts make formal consent mandatory but often extend to stipulate the circumstances under which informed consent can be waived, or usurped by a substitute decision maker.
Before exploring informed consent further, a digression is required to elaborate on the taxonomy of consent. Consent can be either express consent or implied consent. Express consent is that which this discourse is largely concerned with; the explicitly expressed consent conveyed in writing and/or speech regarding a medical procedure or scenario. There is also implied consent which is usually the norm once express consent is secured and established. Implied consent is of two kinds. The first of these is subsumed consent; for example in consenting to an appendectomy the patient also consents to the cutting of his skin and the sending of his appendix to be examined by a pathologist etc. The second of these is inferred consent; for example, the general consent signed when people are admitted to hospital enables doctors to infer that the person’s ongoing consent for things such as daily blood tests and physical examinations is still in effect by virtue of the patient’s continued presence and cooperation with the staff.
B) LEGAL CONSIDERATIONS
Informed consent, while conceptually straightforward, is a nuanced affair. Just how much information is required to be “properly informed”, just how much risk and benefit must be disclosed, and just how to navigate the consent process, are largely theoretical concerns that go well beyond the practical formal concerns of this discussion, but there are notable precedents in Canada that have established some parameters. Once more, although hard thinking on behalf of ethicists does not always reveal a clear or unanimous answer, firm and enforceable guidance is still, nevertheless, sought. Often the legal system is called on to decide on difficult cases, and this serves, in some manner, to point the way.
In Reibl v. Hughes (1980)a defendant neurosurgeon was found to have not adequately disclosed the risks of a surgical procedure that, despite the fact that it was competently performed, still left his patient paralyzed as a result of a complication that was rare, but in this instance unfortunately arose.25 This case set the “reasonable person” standard as the standard for disclosure. In this context, that a doctor should be said to be the cause of harm or injury depended upon whether the level of disclosure in obtaining informed consent would have caused harm to come to any “reasonable person” in that situation and given that level of information; that is, would the deficient level of disclosure have damaged a reasonable person.26 This ruling was based on a foundation of an earlier Supreme Court ruling, that of Hopp v Lepp (1980), wherein the court’s opinion insisted that disclosure must obtain a level of sufficiency to satisfy a reasonable person.27 This disclosure must include answers to specific questions that any patient may have, but in addition must disclose any serious risks that would materially affect a patient’s decision (risks such as, in this case, the rare but serious risk of paralysis). These cases swung the notion of disclosure and sufficient consent out of the realm of medical opinion and attitude and out of the jurisdiction of the medical team, and into the personal subjective realm of the patient—consent and disclosure became, and still are, patient centred.
These considerations continue to be debated by ethicists and legal experts in Canada as elsewhere. Arguably consent and disclosure issues were not definitively answered by the courts in the above named cases as several other cases ensued with mixed outcomes. 28 But direct challenges to the Reibl standard have not been successful.29, 30 While the reasonable person standard is at least palatable to many Canadians, there are many criticisms of this standard, and two that are particularly germane to the bioethicist. First, “reasonableness” is a very slippery concept to pin down and define. Second, the reasonable person standard does not necessarily connect back to, nor ensure protection of autonomy.8 Reasonableness is not necessarily a component of autonomous behaviour: one can quite autonomously make unusual or unreasonable choices (for example participating in particularly dangerous sporting activities), and the right to do these things will be rigorously defended by law and society. Nonetheless, and despite all its shortcomings, the ethical standard for sufficient disclosure in informed consent in Canada (both in theory and in law) seems to be the “reasonable person” standard, and the opinion is that this represents a sufficiently patient centred, autonomy centred approach that squares with a Canadian notion of just what it is to be sufficiently informed.
C) EXCEPTIONS TO INFORMED CONSENT
Two areas in which informed consent can be dispensed with while maintaining ethical rigour: the granting of waivers, and in the circumstance of therapeutic privilege. (Another category of circumstances calls for the dispensation of consent, and that is in the name of public health and security of the greater public—these considerations are, for all intents and purposes, a different class of consent issue and will be taken up in more detail below.)There is no guidance in ethical codes or in law to steer the health care provider when she or he has been granted a waiver, i.e., where the patient has given express permission to the provider to administer health care without the full disclosure of risks and benefits. This is essentially consent without being informed and is a minefield for any health care practitioner to wander into.31 The notion of “therapeutic privilege” whereby a health care provider can administer care without informed consent at his or her discretion citing the need to keep the patient uninformed on therapeutic grounds—for their own good—is a paternalistic notion that is looked upon with a jaundiced eye by North American ethicists and has not been adopted by the Canadian legal system as an expressly legitimate claim.31
Having set waivers and therapeutic privilege apart as being exceptional for the average Canadian does not mean they are exceptional for all persons living in Canada. Canada, as a multicultural nation, must have the means in its health care system to accommodate the needs and norms of different cultures, and the waiver and the therapeutic privilege is akin to paternalistic practices of other cultures, and the paternalistic expectations of patients from other cultures. Sometimes people of other culture have an expectation and wish to remain, by Canadian standards, uninformed. Here too health care providers must tread softly and respect the wishes of patients but uphold ethical standards of law and country. In situations such as these it is generally the practice that if the patient cannot or will not be informed, still, someone (such as a patient surrogate, or family member) must be informed. If a patient expresses a wish to delegate the decision making to a spouse or an adult child, the rules of informed consent transfer to that person and the health care provider must still adhere to them. Take as a typical example: the family of an elderly man with a terminal illness opposes the health care team’s discussion of diagnosis and decision making with the patient directly, the health care provider is still under an obligation to ensure that the patient wishes to relinquish control over these things, and the provider is under further obligation to then ensure that the surrogate is fully informed in giving consent and directing care.
D) AGE CONSIDERATIONS
As noted above, each province has some form of consent legislation. While some provinces have fully developed consent statutes that accommodate many of the points of the foregoing discussion, most provinces’ statutes are more concerned with the manner in which consent giving is managed for those who lack capacity, or for those for whom consent giving must be transferred to substitutes once capacity is lost.32 While informed consent is always requisite, just who can provide that consent depends on many factors.
First and foremost of these factors is age. The age at which a health care provider must obtain informed consent from a patient, as opposed to the patient’s guardian or parent, varies in Canada. Across the various provinces, when it is specified, statutory age of consent to medical treatment varies between 14 in Quebec to 16 in many other provinces such as New Brunswick.32, 33 Beyond capacity to consent in general, there are variations on the extent to which Canadian minors can consent to various specific treatments. For example, to consent to surgery one must be 18 in British Columbia, Prince Edward Island, and Saskatchewan; 16 in New Brunswick; and 14 in Quebec.34 In provinces lacking statutes establishing age of consent to treatment, the age of majority (18 or 19 in most provinces) establishes an age beyond which it is mandatory to obtain informed consent of the patient and not his or her parents.
These various statutes suggest ages at which consent must be obtained from the patient, but below those ages exists a grey zone where obtaining consent from the patient (as opposed to the parents) is somewhat discretionary. In Canada, the notion of the “mature minor” is recognized as valid. A mature minor is someone under the age of majority, and yet decisionally competent to understand the nature of the medical condition and the nature of the treatment suggested, as well as the consequences of consenting or refusing that treatment. Being a mature minor—possessing these characteristics—and giving medical consent or refusal for treatment is necessary and sufficient in Canada, and the parents’ wishes cannot override such consent or refusal.32
If a child understands the health care issue, she or he can make decisions about how best to proceed in the management of it. This does not necessarily square with the health care provider’s notion of how best to proceed, nor may it necessarily square with the parents’ ideas, and any or all of these players may be in conflict. This is not the forum to resolve the ethical issues surrounding such disputes, but the Canadian medico-legal system remains fairly clear on this issue: children who can decide (who have the capacity to decide) are the ones who should rightfully hold sway. This can (and does) place the health care providers in ill odour with angry parents or guardians—and sometimes these disputes end in legal actions—but the respect for the evolving maturity of children and their autonomy is increasingly clear in Canada.32 The notion of the “evolving state of maturity” (also the “sliding scale” discussed above), and the granting of autonomy to a degree that it is commensurate with that maturity, is a concept that is often appealed to in Canadian law, and one that is based in British common law precedents. The so-called “Gillick” precedent was set in 1985 by the British House of Lords whereby it was decided that persons under 16 could not be dismissed as not having capacity based solely on their age.35
Defining a person as a mature minor (by establishing that the capacity criteria are met) is a tricky matter, and one that has been responsible for a number of common law cases in this realm. One issue that frequently arises is that acceptance of a mature minor’s consent may be commonplace in some medical situations (for example to obtain an abortion, or be treated in an emergency room, or to consent to receive a blood transfusion after a car accident), and yet the refusal of medical care is carefully scrutinized (for example, to refuse a blood transfusion after a car accident based on religious beliefs). While this problem (okay to consent… but not okay to refuse) exists frequently when capacity is in question, it is particularly vexing when treating children and adolescents and is fundamentally a problem of epistemic uncertainty on behalf of the care provider. Once more, as was noted above, the “proportionality” must be factored into a consideration of whether the child or adolescent has the capacity to apprehend the gravity of the situation and the treatment proposed. This is particularly the case in decisions about withholding or withdrawing lifesaving treatment.
An example of how perplexing this problem can be, comes in the form of a ruling in June 2009 by the Supreme Court of Canada (SCC) that a child (AC) of Manitoba was not denied her rights under the Canadian Charter of Rights and Freedoms when she was apprehended (at the age of 14 years and 10 months) under the Manitoba Child and Family Services Act and forced to receive a (medically necessary) blood transfusion against her wishes.36 The Manitoba Child and Family Services Act37 which was applied in the apprehension of AC, states that the wishes of the child over 16 should be recognized, but under that age the courts would act in the patient’s best interest in imposing treatment deemed necessary.38 AC and her parents, all devout Jehovah’s Witnesses, appealed the court order for her to receive the transfusion, but the Manitoba court rejected AC’s appeal and this decision was upheld by the Supreme Court of Canada—that is, the SCC found that forcing a 14 year old to undergo treatment was not a violation of Charter rights. And yet, a careful reading of the majority opinion expressed by Justice Abella leaves open the possibility that children under the age of 16 should be allowed to demonstrate their capacity to make medical decisions. Nonetheless, as in this case, when their decision making capacity is usurped it is not a violation of the Charter.
As was discussed above pinning down decisional capacity is fraught with difficulty not just in patient-doctor conflicts of opinion but also when opinions of minors conflict with parents. There are arguments in two camps regarding the very serious questions surrounding foregoing life sustaining therapy. There are some who favour the argument that parents have a legitimate moral claim over their children to make decisions for them (that parents’ wishes should rightly be considered as authoritative in overriding their children’s wishes to forego life saving treatment). And there are scholars firmly opposing the notion that parents are the rightful default decision makers, and that choosing their preference over that of their child’s is a moral transgression insofar as it denies another moral agent (the child) his or her autonomy.20 Once more, position statements of professional societies18, 19 can act as guides, and the law can offer precedent setting decisions on pivotal cases, but it remains that these situations will likely be decided on a case by case basis. And even then, as the above case demonstrates, consent to treatment (or demands to withhold treatment) for situations as serious as those that involve lifesaving treatment will always be far from clear.
In sum, consent in children and adolescents is a complicated affair. There is a large discretionary grey zone in establishing valid consent for children, and these questions and answers often revolve around capacity. In Canada there is no defined age under which a person is presumed to definitely lack capacity.34, 39 Even though some suggest that the consensus is moving toward the recognition of children under 16 as having capacity to consent in most instances, there is no effective lower limit to the notion of the mature minor; it remains context and situation specific. While there is no floor to the discretionary zone of the mature minor concept, a ceiling is fairly well established by the age of majority and the statutory consent laws discussed above; at the age of statutory consent or the age of majority, the wishes of young adults with capacity must be obeyed.
PRIVACY AND CONFIDENTIALITY
The way in which we demonstrate the “respect for persons” concept as a whole is shaped by a culture and a socio-political and legal system. The above discussion reflects duties that flow from the principle of respect for autonomy and, indeed, respect for autonomy is often front and centre in ethical discourse and there are many duties that flow from it. But in every society, in every culture, and in every medical system there must be an acknowledgement of the fact that autonomy must sometimes be surrendered; that sometimes confidentiality must be breached and that sometimes respect for the society must trump respect for persons. Within each society there must be a principled approach to deal with these contingencies and a nation, a health care system, and the governing bodies that oversee them must have rules to guide the members.
This is as good a point as any to introduce a subject that is emerging in the bioethics literature as one of significance and legitimacy, and one that has bearing on many of the topics in this section. That subject is Public Health Ethics. Certainly any future editions of this book, and texts like this one, will have a chapter devoted to this subject as a part of (or in relation to) bioethics in Canada in general. One of the primary reasons it is not set apart in this text is that as an emerging subject and as an academic discipline it does not yet have an established domain. Some consider public health ethics to be a subsection of bioethics and some scholars suggest it as a discipline on its own.40 Some suggest that public health ethics does not map well onto traditional bioethics, especially bioethics dominated by Principlism.41, 42 The line between traditional bioethics (especially clinical ethics) and public health ethics is not distinct and there is plenty of overlap. An attempt to clearly demarcate the two will not be made here. While the bioethics concerns of this chapter have to do with clinical ethics and the individual concerns of a patient and his or her care provider, public health ethics has as its fundamental consideration that careful reckoning of individual rights in balance with the collective needs of the society. So while a chapter cannot be devoted to this most deserving topic now, nevertheless, this being a text of such broad purpose, public health ethics needs and introduction and the reader will be rewarded in bearing in mind public health ethics considerations while navigating the remainder of the chapter.
Before embarking on a discussion of privacy and confidentiality, a necessary digression is required by way of introduction. These two terms are related and interconnected by their definitions and the implications of their meanings. Privacy is a property of persons or groups; it is that property which enables them to be apart from company or observation. This can also mean the property of persons to keep not only their persons secluded but also to keep information apart or unobserved. Confidentiality, however, is a concept that applies to information; it is a state of nondisclosure of information, or the assurance that information is only permitted to be accessed by authorized persons. A discussion of these concepts in the Canadian bioethical framework requires an understood distinction between these two terms.
Privacy is sacred to Canadians. That Canadians should have the right to seclude themselves from others, and that others are barred from prying in on them or their affairs, is enshrined in legislature at many levels. Privacy is fundamental to a respect for persons; it is an application of the principle of respect for autonomy. While privacy rights are not strictly controversial nor are they ethically challenging,43 it is important to gain an understanding of privacy in the Canadian context in order to fully develop the topics of the next section. People have a right to personal privacy, and have a right to have their information kept private or confidential. It is transgressions of these rights and breaching of these principles that is ethically troublesome and the focus of discussion below.
In Canada privacy is protected at several levels. The Canadian Charter of Rights and Freedoms44, while not mentioning the term privacy, still ensures the right to security of the person and freedom form unreasonable intrusions. The Privacy Act45 was enacted in 1983 and has jurisdiction over several federal and provincial agencies. Essentially this act protects persons from intrusion on privacy. It sets limits to what type of information can be collected on Canadians, how this information is stored, and to whom it can be disclosed. The complementary Access to Information Act46 of 1985 was enacted to ensure that people could apply to the government and compel it to disclose what information has been collected on them. In addition there are, in most provinces, “Freedom of Information and Protection of Privacy” acts which also protect and ensure access to information gathered by the provincial governments. There is not only reliance on these legal instruments, but there exists, also, recourse to a government department when privacy issues arise. There is a Privacy Commissioner that is an officer of parliament (he or she reports to the House of Commons and the Senate) and acts as an ombudsman. His or her office is appropriately named the Office of the Privacy Commissioner and this office investigates complaints about violations of the Privacy Act and also conducts audits of government agencies’ handling of private information.
The Privacy Act sets out the ground rules for government agencies. The Personal Information Protection and Electronic Documents Act47 (PIPEDA) that sets out ground rules for how private sector organizations may collect, use or disclose personal information in the course of commercial activities. It was enacted in stages, up until 2004. Under it, Canadians have the right to access information obtained in commercial and private enterprises as well as that collected by government. This act is enforced in all provinces except those which have sufficiently congruent provincial legislation that takes its place—BC, Alberta, and Quebec are the only such provinces.48 In addition to laws that replace PIPEDA there are laws in every province which supplement and enhance all of the aforementioned privacy acts. Each province has legislation which governs the use and disclosure of personal health information by obtained by health care providers and health care organizations. The professional colleges also have outlines and guidelines for the maintenance and disposition of health information contained in patient charts.
Health information, and the way it is stored and recorded, is changing. With Electronic Health Records (EHRs) coming into being and more and more data being relayed electronically there are significant new challenges afoot to the notion of privacy.49 PIPEDA ostensibly covers this realm, but there are pitfalls to be navigated as will be discussed in Chapter 6.
The nature of the health record, what it is and how it is to be considered, has been defined in common law cases. In Canada health information is highly respected and protected, and in relation to that, health information is also held to be a thing that is personally owned. The most significant case testing these notions was that of McInerney v MacDonald50 which was decided in the Supreme Court of Canada (in 1992) and held that a patient has a right to the information in his or her medical chart. While the physician owns the chart, the patient owns the information, and this information and the disposition of that information is at the whim and discretion of the patient. In fact, this principle (as per the ruling) is a component of the fiduciary relationship that physicians have with their patients.50 This ruling has set the stage for the imposition of rules and guidelines for professional colleges in the various provinces that stipulate just what is to go into a patient chart, how it is to be maintained and how it is to be accessed and by whom.51
B) BREACHING CONFIDENTIALITY
Confidentiality pertains to information. Information that is revealed to someone such as a health care provider can be potentially compromising (embarrassing, financially compromising, legally compromising etc.) to that individual. Confidentiality is the concept that this information can be kept safe and only be revealed to authorized persons—persons authorized by the patient. In general, the scope of that authority is very narrow and very carefully defined and scrupulously defended. This is fundamental to a notion of respect for persons. Medical information is protected under the privacy laws outlined above, and the confidentiality of information is central to every medical and allied profession and institution in Canada. Confidentiality is a straightforward concept, and it is a basic right flowing from the respect for autonomy. But respect for autonomy is only one of the principles in bioethics, and where autonomy competes with the beneficence (and or non-maleficence) of the greater society or of another individual, that is the place where contemplating breaking confidentiality becomes a necessary consideration. With a nod to public health ethics introduced above, confidentiality (as an individual right) is carefully protected, but in the interest of the competing collective concerns of the population or society, it is sometimes necessary to breach it. What follows is a discussion of some of the situations in which this can and must occur, the ethical rationale for warranting these occurrences, and an examination of the relevant guidelines policy and law in this arena.
The discussion starts with a look at notification: the mandatory notification and reporting of such things as child abuse and communicable diseases. Next the discussion turns to the notion of a duty to self report, with a focus on the archetypal example, HIV infection. Keeping with the HIV theme, the notion of a “duty to warn” is introduced, that is, the duty of a health care professional to warn a third party who is at risk of harm from a patient under the care of that professional. This concept is further developed with a look at genetic diseases and finally this discussion funnels into a discussion of duty to warn in general and the relevant law and policy that guides health care providers in this difficult area.
1) Reporting And Notification
First, to a relatively non-contentious topic: the duty to report child abuse. A just society provides for its vulnerable and its voiceless members. Sanctity of the family is acknowledged in Canada. The respect for the autonomy of the family in governing its own affairs and directing the course of childrearing according to family (or cultural) values is fundamental to Canadian society. However children suffering abuse or neglect at the hands of their parents, or when the parents are making unwise decisions for them, each province has a mechanism by which children can be protected. Discussion in this section is brief not because this topic is unimportant but rather the contrary, it is so important there is little disagreement (in principle) about the proper governance and enforcement of this area: there is a duty to breach privacy and confidentiality considerations in favour of the welfare of children in every region of Canada.
This is one area where “Good Samaritanism” is not only morally required, but legally required. Section 215 of the Canada Criminal Code outlines the duty parents or guardians owe to children:
Every one is under a legal duty as a parent, foster parent, guardian or head of a family, to provide necessaries of life for a child under the age of sixteen years, to provide necessaries of life to their spouse or common-law partner, and to provide necessaries of life to a person under his charge if that person is unable, by reason of detention, age, illness, mental disorder or other cause, to withdraw himself from that charge, and is unable to provide himself with necessaries of life.52
Breach of this duty is an offence under the Criminal Code, and hence, is a federal concern. But in child protection the prosecution of errant parents under criminal law is not the issue of primacy, child protection is carried out under civil law. The courts have inherent jurisdiction over incapacitated persons including children, under the general and ancient common law provision of parens patriae—the legal concept by which the state is given power to intervene and protect those who are being abused or injured and are unable to protect themselves. In effect, parens patriae is the legal instrument by which the state can effectively become the “parent” when a real parent or caregiver is effectively lacking or negligent. This common law mechanism is not often invoked as there is almost universal statutory law across Canada that makes the means of child protection more explicit. Each province has a child protection agency that is run by the ministry responsible for family and child development. These ministerial departments have different names in different provinces (it is called the Ministry of Children and Youth Services in Ontario, and the Ministry of Children and Family Development in BC) and they refer to this issue variably as child welfare or child protection. Their mandate is established by provincial legislation: in BC, this is the Child, Family and Community Service Act; in Ontario, the Child and Family Services Act; and in Alberta, the Child, Youth and Family Enhancement Act.
It is mandatory in Canada to report abuse or neglect of children to the ministry. It is important to note that it is mandatory for anyone to report abuse that is witnessed or suspected, not just health care workers. Children are deemed to need protection if they are physically or sexually abused, emotionally harmed, deprived of necessary health care53, or if parents are absent from home or have otherwise abandoned their children and are unwilling to provide parenting. The legislation typically protects the identity of the reporting persons as well.
Children can be apprehended by law enforcement, hospital personnel etc., and are usually given over to social workers or similar agents. Immediate health concerns are managed before the children are ultimately found safe living conditions—usually this is in the home of another family member or a foster home. The case of a child needing protection will be decided in a court. Sometimes this means several hearings and navigating a complicated legal process before a definitive outcome is found. Ultimately, the goal is to return children to their home of origin or their family once the potential for abuse is mitigated or the situation has been dealt with. The child protection laws give authority to child protection workers to follow up on the safety of the children long after they are returned to their parents or families and sometimes the children are supervised or returned gradually to live with their parents.54
Moving from the concerns of the vulnerable individuals to the public health concerns of a population, there are other forms of mandatory reporting that are not predicated on “good Samaritan” principles but are nonetheless good for society and overstep confidentiality of patient information. In Canada there are a whole array of situations that require reporting under the various health acts, motor vehicle acts, and vital statistics acts (etc.) of the provinces and territories. These include unexpected deaths and births and many, many matters in between. All deaths must be recorded as vital statistics. Deaths must be reported to the coroner’s office if they are unexpected self-induced or accidental, or if they occur outside a hospital for a patient that is not known to be terminally ill. Births are also required to be recorded. Accidents that occur at on a worksite are required to be reported and managed through the appropriate Worker’s Compensation Board (or similar agency) in each province. In addition there most provinces have registries of certain medical conditions, such as cancer registries that compile statistics on and monitor follow-up of cancer patients.
There are times when confidentiality can be breached to protect members of the public from harm. There is a duty to report impaired physicians and a duty to report physicians suspected of sexually assaulting patients, and to report impaired flight personnel—these serve also as a means of professional regulation. There is a duty to report impaired or unfit drivers (such as those with seizures or dementia). This list is not comprehensive but serves to point out the extent of the paternalism and the range of harm reduction tactics that are invoked in the name of the greater good. It also highlights the degree to which breaches of confidentiality occur within a nation that holds autonomy so dear.
With an appeal to a (legitimate) public health agenda, Canada has several mechanisms in place for the protection of its citizens against certain communicable diseases. This is one of the few legislated (albeit very limited) breaches of confidential information of patients per se. It is mandatory to report diseases (both new and emerging, as well as old and now rare) that pose the threat of rapid spread, difficult containment, or that pose threat of significant morbidity. Reports are made to provincial health authorities (usually to a “Provincial Health Officer” or “Chief Medical Officer” of the various provinces), but these authorities differ in their scope. For the most part, tracking and reporting is automatic and there are robust federally or provincially mandated agencies at the helm. Most of this reporting is not done with the immediate knowledge or consent of the patients involved; and for the most part this is understood as acceptable by citizens in the society.
Communicable diseases which are reportable, or notifiable, are listed in the Notifiable Diseases Summary at the Public Health Agency of Canada (PHAC).55 There are provincial and territorial statutes in each region stipulating the reporting of these diseases provincially and ultimately nationally and a report is published as the Canada Communicable Disease Report (CCDR) to monitor trends and keep surveillance.56 These diseases include sexually transmitted diseases such as chlamydia and gonorrhoea, and the re-emerging syphilis. Reporting also includes now rare diseases that were once common but are carefully monitored in light of attempts at vaccine eradication. Examples include such things as measles mumps and rubella. Significant chronic infections such as Hepatitis C and HIV are reportable. Syphilis is an example of why it is important to report infections inasmuch as monitoring has revealed new outbreaks and vulnerable populations that are affected by this new visitation of an old scourge.57 Other infections are reportable not only to monitor demographics and aid prevention, but also to monitor treatment and follow-up; the example of tuberculosis (TB) will be discussed in the next section. It should be noted that infectious disease reporting while effective within a province, and while effective in conveying statistics to national agencies, are not perfect inasmuch as contact tracing (wherein the public health agency responsible will track down contacts of the index case or infected patient) between provinces often breaks down.
Patients have no choice over the reporting of these diseases, their confidentiality is implicitly waived. It is the responsibility of health care providers to report this fact to patients before the testing is ordered so that patients can make an informed decision about their rights and, in effect, voluntarily waive their confidentiality. All this is not to say that their confidentiality is entirely waived, while these diseases are reportable, it simply means that persons other than the health care provider and the patient have access to the results. These results do not go beyond the disease control authorities and any follow-up contact tracing done by these authorities is anonymous—patients’ information is not public, the confidentiality seal is broken and the envelope is simply expanded.
There are diseases that lie in ethical grey zones. It is mandatory to report HIV in all provinces and anonymous contact tracing is provided by the various disease control agencies in the provinces (again, this is sometimes ineffectual between provinces). This arrangement has driven the emergence of a new issue and a hot topic among those interested in public health ethics, one that is especially acute in the management of HIV. Breaches of confidentiality are allowed in the reporting of HIV so it has been questioned whether people will forego testing on these grounds alone. That is, it has been a growing fear that people will remain intentionally ignorant of their infection to spare themselves the stigma and embarrassment of notification and contact tracing, and this situation, of course, puts the broader society in harm’s way as possible infections go unchecked and unreported. One theoretical way to resolve this issue would be to allow anonymous testing of individuals, they (theoretically) could spare themselves the pain of shame and stigma, and society could then rely on them to be good stewards of this personal information and use appropriate discretion in their sexual and drug use habits.
A complete discussion of this cannot be had here, nor are there agreed upon resolutions of the argument in either the empirical or theoretical literature. Nonetheless, there remains a loud cry for the availability of anonymous testing in Canada (and the US). There is no true means of anonymous testing at hospitals and labs in most provinces as positive tests will be traced back to identify and record the patient and the disease and contact tracing will be attempted. There are, however, specialized facilities in many Canadian cities that attempt to provide anonymous (so called “non-nominal”) testing whereby a patient’s identifiable information (such as name) is not attached to the lab result.58 If the US is any indication, this is a trend that will likely continue to grow: in the US as of 2005 there were 45 states that offered anonymous testing.59
2) Disclosing and Warning
Reporting is akin to disclosing when the information is transmitted, not to a government agency, but to other personal stakeholders. In discussing the obligation to self report (disclose), HIV is a prime example. There are several aspects to this issue. First: consider the obligations that a health care provider has to his or her patients. Much of the above discussion involves the respect for the autonomy and the confidentiality of patients, but one other way in which the interests of the autonomous person must yield to the needs of the many is in the doctor patient relationship where there exists the potential for harm to patients. In this respect, the old adage, “first do no harm” is immediately apparent as operational—non-maleficence must come before autonomy. As discussed above, in every province there are professional colleges responsible for the licensing and the discipline of physicians, dentists, midwives, nurses, podiatrists and other specialties that provide patient care (for example the College of Physicians and Surgeons of each province). Health care providers that deliver this care have an ethical responsibility to report to their professional college the presence of a diagnosis that could compromise their patients—the classic example is the surgeon who has HIV. The college can then, at its discretion, restrict or alter the licensing of these professionals, but it is usually left to the professional to self report in the first place, and hence restrict his or her own practice so as to not compromise his or her patients.
The next aspect of the duty to report, is the duty a person has to report his or her own HIV status to a sexual partner. (This can be viewed as a transition to the issue of “duty to warn” dealt with immediately below.) While there are several specific American laws on this count, Canadians rely on sections of the Criminal Code for sufficient jurisprudence in this realm.60 Although not strictly speaking the first case, the most prominent case and the one that has set the stage for future precedents was that of R v Cuerrier wherein Henry Cuerrier was charged and ultimately convicted of assault for having sex with two separate partners.61 Here it was found that because, although the women consented, they were not told of his HIV status and therefore (taking a page from the bioethics playbook) could not be considered to have given proper informed consent. Since then, there have been over 70 such cases in Canada, and some HIV advocates would suggest that they are tendering an ever increasingly pernicious attitude in law against persons with HIV/AIDS.62 In April 2009, Johnson Aziga was convicted in Ontario for two counts of first degree murder (the first conviction on this charge in Canada) for infecting two women who died, and several counts of aggravated assault.63
3) Duty to Warn
As was mentioned above, there are duties to report many diseases and circumstances, but where this crosses over to a duty to warn the public or a specific individual, is a significant departure from the confidentiality issues that have been discussed so far, and a significant area of contention in the study of public health ethics. Where a duty to report becomes a Duty-to-Warn is another area in which confidentiality is waived and represents an ethical minefield that has not been entirely mapped. The basic logic here follows the “Harm Principle”: that individual rights and autonomy must give way when there are risks of harm to others.64 Carrying on in the theme of HIV, there is an obligation to report HIV to provincial health officers, and then a duty for said officers to attempt contact tracing of possible sexual contacts and give information to contacts about the need to be tested. (This is standard with any STD or reportable disease, and the health officers duty is usually dispatched through its mandated delegate, the provincial centre for disease control.) All of this is done while maintaining the anonymity of the index case. But precisely when it becomes a duty to broadcast the status and identity of a potentially dangerous infectious person to the general public, is a topic which is long on speculation, yet short on empirical evidence and legal backing. Police forces have been criticized for releasing media advisories on known HIV positive persons, and on the other end, governments have been criticized for not warning about potentially dangerous HIV positive persons. Thus far, there have been no legal cases specifically involving either a duty to warn, or the breach of duty to warn, for a health care provider to warn about an HIV infection or HIV infected person.65,62 The years to come will be fraught with challenging cases and evocative new policy as this disease pushes these ethical issues to new extremes and with a new urgency.66
While much of the foregoing discussion surrounds HIV—as it exemplifies the ethical problems and defines the contour of the law and policy of Canada in these ethical realms—there are further, broader concerns about a duty to warn that move beyond this archetypal disease situation. Before moving to a general discussion on duty to warn and protect, a digression is warranted into the realm of genetic diseases and the obligations that flow from their diagnoses. Just as serious socially transmissible diseases evoke questions of duty and obligation, so too do serious genetically transmissible diseases evoke such questions.
Much is made in the bioethical literature on defining the full extent of this issue, and much ink spilled also on the implications of legislation and policy in this realm. Genetic issues are simultaneously individual and familial in nature, the one facet merges into the other, and obligations to the patient sometimes collide with obligations to patients’ families, and this, in turn, places a health care provider on very thin ice. Part of the problem in this realm is in the determination of risk and imminence, and whether this information would be certain to benefit the third party—these issues are considered below. The uncertainty of these factors gives duty to warn a dubious legitimacy, yet the magnitude of the diseases considered strikes fear that failing to warn could be catastrophic. As the risk of injury stemming from ignorance is amplified, the case for a duty to warn becomes more compelling.
In Canada there is no specific statute or law which governs this problem, nor has there been a case to test the matter of whether it is ethically justifiable or obligatory to inform family members of a serious genetic illness diagnosed in one’s patient.67, 68 Canada can look to significant cases internationally for guidance, as these issues have been forced upon other countries and where they have been decided in courts there are precedents for a duty to warn, and where professional advisory bodies have been forced to scrutinize the issue, policy has condensed into guidelines that favour a duty to warn under specific circumstances.69 In the US there have been three cases that have found a physician has a duty to warn the relatives of a patient with an identifiable genetic disease, or at the very least, warn the patient that he or she has the duty to warn the family members.70-72
This area remains unclear but it is possible that some of the law and policy recommendations discussed below may, in theory or in practice, come to bear on this issue. What is certain is that in the rapid advance of medical and genetic technology, this is sure to be an ethically charged area that will continue to be confronted and shaped in the years to come. At present, the current ethical guidelines seem to accommodate these issues at least to some extent. Current good clinical practice guidelines of any Canadian professional body would certainly accommodate general recommendations. Before a diagnosis is even made, genetic counselling should take place: counselling that sets a clear course for the patient regardless of the diagnosis, and a clear plan of action for the disposition and disclosure of the information once it is available. In this manner, the issue of a duty to warn is likely to be stemmed before it becomes an issue. Once a diagnosis is made, it is advisable that physicians (or more likely and more appropriately, a genetic counsellor) first ask the diagnosed patient to disclose of their own accord (even facilitating a family conference or helping to draft family letters to enhance understanding). Failing this the physician (or counsellor) should next try to gain the consent of the index case before disclosing to family members.68 Beyond this there are no firm guidelines but the good judgment of the clinician and decisions should be made after consideration of the general circumstances under which a duty to warn is warranted, and discussion will now turn to this.
Generally and conceptually, the notion of a duty to warn jibes with basic ethical considerations; there is a point at which rights to individual autonomy must yield to the collective concerns of the broader society. Precisely where this threshold is located is a challenge for bioethicists (and public health ethicists) and for health care providers on the front line. The problem is fairly straight forward (and a detailed discussion of this will be left to the bioethical and public health ethics theorists, and to other texts): the relationship between a care provider and patient is often very intimate, and trust and confidentiality are integral to actually making this relationship work. Betraying confidences, even while advancing the needs of the broader public, may utterly destroy the provider-patient relationship and, in turn erode the foundation of the care giver-patient enterprise. And this enterprise, the Canadian health care and social welfare system, is sacred, dearly cherished, fiercely defended, and scrupulously maintained and paid for by the Canadian public—threatening it is something Canadians do not have much appetite for.
Where a dearth of concrete empirical data and a paucity of incontrovertible ethical doctrine create a vacuum, the space is often filled by legislation. Patients’ confidentiality is protected by statutory law and policy as was noted above, but there are no specific laws to instruct just when to break these confidences aside from the situations already noted regarding driving, flying, birthing or dying. There is no statutory legislation on obligations placed on health care providers to warn or protect their patients. Rather, this obligation is defined in Canada by case law. These concepts called “duty to warn” (which was introduced above) and “duty to protect” have a fairly rich case law evolution in Canada, but before a discussion of this, it is necessary to make some distinctions between these terms. Duty to warn means an obligation of the health care provider to warn a third party (or potential third party) of danger from a patient of that health care provider. Duty to protect goes beyond duty to warn and includes the duty to protect a third party—this can include actions performed on the threatening patient, such as holding them against their will under a provincial Mental Health Act.73–74
As discussed above, in the Canadian framework most health professions are self-regulatory; that is, they are governed by professional colleges that have codes of ethics and conduct, and more importantly are sanctioned by the provincial health acts to license and govern their members. Furthermore, regulatory bodies are to ensure that “best practices” are implemented by their members. It is this arrangement that gives the legal instruments their teeth. Enforcing a duty to warn or penalizing a health care provider for not carrying out this duty is an issue fraught with controversy and difficulty. Patient advocacy groups have in some instances pointed out that the law does not require a health care provider to breach confidentiality but rather permits him or her to do so. Stemming from concerns noted above, this is particularly the case with HIV notifications; HIV patient advocates are quick to point out that the common law does not oblige, but rather grants discretion in disclosure. It is difficult to define just how far to go in carrying out the obligations. Many health care providers are poor assessors of risk or predictors of the actions of their patients, and this imposes a rather open ended obligation on them to protect or warn. Legal analysis has suggested that the liability that providers have is in the assessment of the degree of violence or harm that can be done and not in prediction of probability—the magnitude, not the likelihood, takes precedence.75
There is a rich history of case law in this realm. The American case of Tarasoff v Regents of the University of California is the case that is often first cited (even in Canadian law) in the development of an understanding of the duty to warn. In this case a psychologist was deemed to have an obligation to warn and protect third parties (in this case Tatiana Tarasoff) threatened by one of his patients.76 Canadian case law evolved more slowly and points of law established in increments. It was established that physicians were responsible to act reasonably to warn and protect the general public from harm, both identifiable and non-specific non-identifiable victims.77, 78 Furthermore, a patient’s chart and information could be commandeered for the purposes of preventing injustices to others.79 But it was the landmark case of Smith v Jones that set the bar in this topic.80 In this case a man (Jones) was charged with assaulting a prostitute. He was assessed, at the request of the defence, by a psychiatrist (Smith) who determined he was very likely to repeat his offence and kill or maim prostitutes in the future. While Jones ultimately pleaded guilty, the issue became one of whether the psychiatrist could disclose the information about his dangerous patient to the appeal judge. Indeed Dr. Smith earnestly wanted to disclose this information as he feared for the greater public. Ultimately, the ruling in the Supreme Court of Canada held that the information was to be revealed to the court, and that the counsellor-client privilege (between a lawyer and his or her client), and by extension the physician-patient privilege, should be sacrificed for the greater good of protecting the public. The opinion of the court outlined several factors that were to be considered in breaking confidential relationships and these continue to provide basic guidance in this realm.
So after all this theoretical and legal consideration, there are a few practical things that can be said to guide health care providers in their duty to warn and they were derived in the following forums. In 1998, a working group of medical experts in Ontario established several guidelines for the duty to warn. These included the general recommendations that a physician (and this can be broadened to include other care providers) must warn if a patient threatens a third party with serious harm and if that harm is “more-likely-than-not” to be carried out. This was true of threats on identifiable individuals (“I am going to kill Mary Smith”), or non-specific yet credible and well planned threats (“I am going to plant a bomb in this place…” or “I am going to continue to molest 8 year old boys near my home…”). Further recommendations were that there should be some standard by which to evaluate these threats and their risks, and in the face of uncertainty that an evaluation by another colleague, as to the extent and seriousness of the threats, should be sought. Finally, there were recommendations that all threats should be seriously considered by health care providers and that it was better to err on the side of caution in notifying authorities.75 These general rules were adopted by the Royal College of Physicians and Surgeons, the Canadian Medical Protective Association (CMPA), and Ontario professional colleges. A year later the Smith case developed a notion of which factors should be considered in adhering to these recommendations including: what the specific threat is, how serious the threat is, how imminent the threat is and how likely to be carried out (whether the patient actually has the means etc.), whether the intended victim is specific or general, whether there is a history of this type of violence in the patient’s past. The CMPA, which is the institution which oversees the medico-legal affairs of physicians, still adheres to these general principles and uses the Smith case for illumination.81
In sum, in dispatching these duties to warn and protect, the recommendations backed by law have been variously interpreted, but in the broadest of terms include some of the following guidance. If a threat is likely and imminent, and if the potential for serious harm (physical or otherwise) is great, care givers should warn the local law enforcement and even, in some cases, the third party. It is also included in the duty to protect that the care giver could consider detaining the patient under the provincial mental health act against his or her will. Further, almost every professional society recommends that in cases like these the care giver should seek legal counsel of his or her own as soon as possible.
INVOLUNTARY TREATMENT AND QUARANTINE
A) INVOLUNTARY TREATMENT
Informed and voluntary treatment of a patient exercising his or her autonomy is held up generally as the ideal for competent patients. But not all patients are treated voluntarily. There are times in the provision of health care that the recipient’s autonomy has to be overridden. For those that lack capacity (such as children) necessary treatment is given despite their protestations—this of course is rightful paternalism and the very act from which paternalism the term is derived. Parents have the right (indeed a certain obligation) to treat their children. Canada is certainly no exception in recognizing that some persons need to be treated involuntarily in order to prevent harm to the person himself or to others (recall the “Harm Principle” noted above); Canada, as with other nations, has provisions for the treatment of patients with mental illness that lack capacity. Canada also has unique laws for treating some patients with communicable diseases that endanger others. There are also provisions to treat persons that lack capacity and are suffering neglect or abuse.
Parents are the rightful decision makers for their children, and this is recognized in spirit and in law. As was mentioned above there is a legal (and ethical) duty to report child abuse and neglect, but it is also possible to make children who are denied necessary and appropriate treatment wards of the state in order to provide necessary treatment against their and their parents’ wishes. The classic example is for blood transfusions for young Jehovah’s Witnesses, but as the case above (A.C. v. Manitoba) demonstrates, this is not always straight forward. The difficulty with these provisions stems from the undefined consent and capacity laws, and cases do require scrutiny when children are of questionable or borderline capacity. Canada differs little with much of the developed world in its legislation regarding such matters.
Canada is similarly non-divergent on the issue of helping psychiatric patients. It is nationally understood that the treatment for those in danger to themselves or others is necessary. The mechanism by which this is accomplished is through legal instruments. As with the rest of the health care system in Canada there are two levels of jurisdiction with the bulk of health care being overseen by the individual provinces and territories. Forensic concerns in mental health, that fall within the criminal realm, are managed at the federal level because they fall under the auspices of the Criminal Code. The matter at hand is the discussion of usurping autonomy via an appeal to mental health concerns, and that is largely a provincial affair as it falls to the provincial mental health legislation to manage these things.
Each province has a mental health act (writ small because it is not always named such in each province but is generally referred to by that name) that permits involuntary admission to hospital including the use of force, confinement, restraint, and, if necessary, the apprehension (or the return to hospital) of patients at risk of harming others or themselves. There are a few objectives to mental health legislation. One class of objectives concerns protection: the protection of society and the protection of mentally ill persons from themselves. The goal of legislation, in respect to these objectives, is to permit the appropriate treatment of persons so that they are no longer a threat, or that they may be made fit enough to stand trial; that is restore autonomy to the point that they can see and redress their harmful behaviours, or so that they may have autonomy and insight restored to the point of confronting their accusers on an equal playing field. Another objective is the restoration of autonomy by means of forced evaluation and imposed treatment. In this respect, Canada, as a just society, uses mental health legislation not for punitive ends but rather to restore health (and autonomy) to its citizens. Finally, another class of objectives of mental health law is to provide a vehicle for guardianship of those who lack capacity, and this will be discussed below.
There are strict limits to the power and jurisdiction of mental health laws. All the mental health acts aim to treat people within the parameters of the Canadian Charter of Rights and Freedoms—the appeal to the charter is made to ensure, first and foremost, that persons with mental health disabilities will not be discriminated against. While it is sometimes necessary to admit patients against their will, there are rigid limits to this restriction of autonomy. It is possible and necessary to admit persons, but it is not permissible to administer treatment for anything other than a life or safety threatening illness. For example, if someone is incapacitated because a psychotic illness, and they are at risk of self harm or harm to others, the psychotic illness can be treated, but it is not acceptable to treat their other health concerns (for example a chronic disease or even an infection such as HIV) aside from those that are emergent or life threatening. The very fine line between treating those diseases relevant to the “incapacity,” and the “harm to self or others” stipulations, is not always clear, for example a disease process that is not strictly mental health related, but may nevertheless be affecting ones mental state (an example would be a severe infection, like meningitis, that causes delirium).
In addition to these limitations, the existing mental health legislation is not to be taken automatically as the final word. There are appeal processes embedded within each of these legislative acts, and means by which a patient can try to oppose the instituted treatment. The patient has the right to appoint a surrogate decision maker of his or her choice to help in making treatment decisions. However, even the surrogate cannot refuse the treatment that will relieve the condition that is causing the person danger to himself or others without first appealing to a review panel (which usually consists of a lawyer, a physician, a psychiatrist, and a layperson).
Knowing the limits of this legislation does not necessarily bring us further to an understanding of the jurisdiction of mental health law, and this is a complicated subject indeed, as the parameters vary from province to province. In Canada, mental health law has been undergoing recent changes to keep pace with new challenges and new understandings of mental health issues.77 But mental health legislation is still, at its core, a mechanism to compel and coerce persons; an ethically repugnant notion, to be sure, and one that is carefully monitored by Canadians. Mental health acts have, at various times, been under considerable scrutiny for the differences between these provincial acts. There have been substantial revisions of many of the provincial and territorial acts, but many differences remain and there is a lack of consistency in their implementation and application.78
Ostensibly, mental health legislation is a vehicle to help people, both patients (with a nod to a benevolent paternalism), and society (with a nod to the “Harm Principle,” or the principles of beneficence and non-maleficence). Ultimately this means limiting freedom and treating persons against their will to greater or lesser extents. It is very important to note that one consistent aspect of mental health law is that its overarching objective is not to punish, incarcerate, or simply remove citizens with mental illness; its overarching goal is, in fact, to facilitate treatment. But facilitating treatment does not always mean forcing treatment. In Ontario, in fact, persons can refuse psychiatric treatment under some circumstances. In British Columbia it is the opposite; a person held under the Mental Health Act (here writ large because that is the name of it in this province) cannot refuse psychiatric treatment regardless of the patient’s insight into the nature of the treatment. In Alberta and Manitoba persons who have insight into the nature of the treatment can refuse treatment once they have successfully stated their case to a review panel (even if they still meet the criteria to be held against their wishes). In Saskatchewan and Nova Scotia, persons cannot be held under any mental health act if they are capable of making treatment decisions.77 To further complicate matters, there are mechanisms in place to impose mandatory treatment on patients in the community (i.e., once they have left the mental health facility) in Saskatchewan, Ontario, and Nova Scotia.77 Generally speaking, the goal of treating and helping mentally impaired persons in need is usually achieved, but the fact that there are such differences between the provinces will likely remain an issue for the foreseeable future.
Before moving to another topic within the realm of involuntary treatment, a necessary digression is required to briefly elaborate on another public health topic, a topic that falls somewhere between the notion of treatment and prevention, namely the topic of immunization. Religious and cultural rights are very rigidly guarded in Canada, so much so that provisions are often made for conscientious objection of many otherwise mandatory things. Immunization programs are instituted in all provinces and they are mandatory under provincial legislation (once more the name of the acts varies from province to province) but there is the option for parents to refuse to immunize their children on grounds of conscientious objection if immunization does not square with their religious or cultural beliefs. The compliment to this “opting out” (and the instrument that ensures the continued safety of the broader society), is that these same rules also legislate that day-cares and schools are within their rights to refuse admission to those children that are not properly immunized, especially if there is an epidemic stirring involving the disease in question.82
Involuntary reporting of diseases is one issue, but involuntary treatment is another issue entirely. Canada has a particular problem that sets it apart from other developed nations; and that is its problem with tuberculosis (TB). There is still a relatively high prevalence of TB among the Canadian Aboriginal population and among HIV positive persons; so much so that there are particular mechanisms in place for the surveillance and treatment of this illness. In recognition of the danger of untreated TB and its communicability there are provincial registries for identifying and initiating treatment for this disease. A particularly militant approach to TB management has been employed in the various provinces. There are rigorous TB Control programs in all of the provinces that allow for treatment of willing and able patients but also provision of treatment for the unwilling. Daily observed therapy is initiated in many inpatient centers, and followed up once the patient is in the community. Generally, these programs are acceptable to patients, but infrequently patients have to be hospitalized and even incarcerated against their will.83 Patients can be kept against their will on account of the danger they pose, but they cannot be forced to receive treatment. These situations do indeed test the limits of the principle of autonomy and the respect for persons. Ultimately, the issue at hand here is one not of involuntary treatment (the treatment is ultimately optional), but one closely akin to that of quarantine.
The Canadian Charter of Rights and Freedoms stipulates that it “guarantees the rights and freedoms set out in it subject only to such reasonable limits prescribed by law as can be demonstrably justified in a free and democratic society”.84 Once more, autonomy can be guaranteed up to a point, and then the needs of the greater society must come to bear on the matter. Quarantine is an ancient concept and has been invoked in one form or another since the beginning of recorded history. That certain individuals should have to sacrifice their freedom for the needs and well-being of the many, is not a particularly challenging ethical concept but implementing this principle at the time of crisis has many challenging dimensions that have vexed public health ethicists. Many of these challenges are proactively addressed in disaster or pandemic planning—a topic that has little to do with care provider patient relationships per se, and so it will be left alone. Individual rights and freedoms disintegrate in the face of disaster or pandemic. In any society, the degree to which it is even able to respect individual autonomy to any significant extent is a testament to the stability of that society, its sound and just governance, and the quality of its health care system. That Canada has little experience with implementing disaster or epidemic measures is a testament to its relative stability.
Canada has two levels of quarantine authority. The federal Quarantine Act of 1985 was revamped in 2006 after the SARS epidemic and is overseen by the Public Health Agency of Canada—a federal government agency. At the federal level, this act has more to do with the interprovincial and international aspects of epidemics or pandemics. The provincial legislation also has authority (under the provincial public health acts) to manage quarantine related issues at the provincial level.85 These are variably named: in Nova Scotia it is the Health Protection Act, in Ontario the Health Protection and Promotion Act, in Alberta and Saskatchewan the Public Health Act, and in British Columbia the Health Act. Regardless of the name, the important consideration is the fact that in Canada, a free and democratic country, there are legislated means by which private citizens can be coerced to submit to testing, and have their movements restricted and their liberties curbed in the name of the greater good of the broader society in the throes of a communicable disease threat.82 Canada has not had to face large scale quarantine related questions for many years, but the rise of international travel and the emergence of new diseases threaten this tranquility.
In 2003 an outbreak of Severe Acute Respiratory Syndrome (SARS) forced Canadians to confront the issue of quarantine in a new age, and to confront head on just how precarious autonomous concerns are in the face of a looming societal crisis. The impact of SARS was enormous on all facets of Canadian society, from the individual level up to the national level and extending even to redefining Canada’s place in the international community.85, 86 SARS infected 438 Canadians and killed 44 of them, but it also affected thousands directly (for example, 25,000 people in the greater Toronto area were quarantined); and affected tens or hundreds of thousands indirectly in countless other ways.86 Thousands of people had their personal and work lives disrupted during the several weeks of this outbreak. Almost without exception, this was accepted by Canadians who adhered to quarantine recommendations and self-imposed limitations willingly and peacefully.85
Long before the epidemic, it was felt that Canada’s public health structure and public health law would not adequately accommodate such an epidemic and the emergency preparedness and response that a devastating event such as this requires. The fact that the epidemic was contained is a testament to the importance and strength of such policy and legislation. Nonetheless, many recommendations came from an analysis of this epidemic afterward, and this was a laudable attempt at correcting practical and ethical problems that attach to the imposition of quarantine legislation. Some of these corrections came in general ways such as the formation of a new Public Health Agency; and some of these changes had a more specific and individual focus, for example, specific measures to attend to the financial concerns of citizens inconvenienced by a quarantine etc. In a free and democratic state, drastic measures such as quarantine legislation are never desirable but it would seem that Canadians in their acceptance of these impositions, as demonstrated in the SARS epidemic, have spoken with action that endorses a significant instance of their willingness to sacrifice individual autonomy for public welfare.
Another ethically steeped area of patient care is the realm in which patients have lost capacity but require care. The necessity for accommodating such persons and their concerns has been well developed by bioethicists. The principle invoked is, once more, respect for autonomy; the notion that a person’s autonomy should rightly outlive their capacity to decide. A respect for persons dictates that a person should retain autonomy over his or her affairs beyond their ability to decide—that the enduring goals and values of an individual should continue to endure (through written or expressed directives) beyond the loss of capacity, and this includes the appointment of a substitute decision maker to be the voice of the voiceless.87–88 The theoretical landscape of this topic is nuanced, and while the need for substitute decision making is well understood and accepted in Canada, the practicalities of managing and implementing the concept is not always straight forward in the day to day running of health care and taking care of patients. The principles are straightforward, but a principled approach to implementation is another issue entirely. Canada has struggled to find solutions to the problems and answers to the questions.
When patients cannot speak for themselves, a substitute must be found. In emergency situations treatment is provided by the hospital or health care agency, indeed emergency care is mandatory. But when it comes to the ways and means of securing a temporary substitute decision maker outside of an emergency situation (for example, for an individual experiencing cognitive impairment due to a progressive dementia) the question that looms the largest is that of just whom to call upon. Broadly speaking, the common sense answer is that the person to call upon is the one designated by the patient, and that is the accepted practice in Canada. If the incapacitated person has not specifically and expressly designated someone, the next in line for this job of surrogate decision maker would logically be someone “close” to the person, and this makes a leap in complexity of the problem inasmuch as it calls for a definition of “close”. For better or worse, when a person cannot make his or her own decisions, in Canada as in other systems, the persons that are turned to are the family and friends of the incapacitated patient.
Interestingly, in Canadian common law, the answer to the question of just whom to call upon, seems to be either the court itself (under the parens patriae concept discussed above) or a court appointed guardian.32, 89, 90 Neither of these options, on the face of things, seems particularly appealing, and furthermore, seems to run contrary to the logical answer given above. Officially (in the absence of statutes declaring otherwise) the only legally legitimate surrogate is the court or a person appointed by the court, but in practice, family and friends are sought after to give guidance, even though such persons have no true authority under common law. Emergency treatment is always allowed under common law even in the absence of a court appointed guardian, but the only province that extends this to other treatment is Alberta wherein the Dependent Adults Act91 (2000) gives discretion to physicians to act on behalf of patients who lack capacity in urgent (not emergent) situations. By this act, a physician can consult with a colleague and the two of them can make and implement a decision concerning the patient’s care independent of, and even in the presence of, a family member or loved one.32, 90
This state of affairs has been deemed unsatisfactory in most of the provinces, and their response has been to enact legislation that addresses the problem and empowers family members and loved ones to act as substitute decision makers. These provinces include British Columbia (Health Care (Consent) and Care Facility Act92), Newfoundland (Advance Health Care Directives Act93), Ontario (Health Care Consent Act94), Prince Edward Island (Consent to Treatment and Health Care Directives Act95), Yukon (Care Consent Act96), Nova Scotia (Hospitals Act 97), and Quebec (Civil Code of Quebec98). In addition, every province and territory, except for Nunavut, has legislation which permits the legal appointment of a health care proxy by a person before they become incapacitated (this is discussed in greater detail in Chapter 3 under the topic concerning advance directives).32 Finally, beyond the legal instruments, the fundamentals of surrogate decision making and advance directives are outlined by such things as official policy statements of the Canadian Medical Association.99
In Canada the order of command in securing a proxy is not as rigid as it is in some countries and states, but the order of persons asked to fill the role of substitute decision maker does follow the conventional wisdom of other nations, such as the US. This “chain of command” is often specified by the individual acts enumerated above, but generally runs as follows: first and foremost, is the proxy appointed by an advance directive; next are spouse, adult children, parents, and then siblings.32 Close friends and other loved ones are given special consideration in light of individual circumstances. Persons are disqualified if they are estranged, or have not had recent contact with the incapacitated person, or if there is an obvious conflict of interest. Canada has an added element of complexity, and an added dimension to the notion of “respect for persons”, in the recognition of same sex unions. Even when not formally married (same sex marriages are legal in many provinces and recognized nationally), a same sex couple has “common law” marriage status the same way heterosexual couples enjoy protected “common law marriage” status. It is commonplace to look to the partner of a patient, regardless of the type of union, as the next of kin. While this may not sit well with all people, and it is not expressly graven in the stone of the law, it is a reflection of contemporary Canadian values and culture.
The health care team is always in a difficult position when dealing with the compromised incapacitated patient and there may be more than one candidate for a substitute decision maker. The choice of surrogate is made by the patient if she or he has an advance directive but if not, it is anticipated that the family and loved ones can come to consensus on who should be appointed. The respect for a person and his or her autonomy is enhanced by a careful choice of surrogate based on knowledge of the patient’s wishes rather than the legal status of the surrogate’s relationship with the patient; paternalism is mitigated in Canada by the flexibility employed in such choices.
In Canada, when there is no one else, there are Adult Guardianship acts that provide patients with a temporary substitute decision maker. In this case, the public trustee’s office in any given region is consulted and a guardian appointed by law.100 Having a publically appointed guardian is less than ideal, and another more suitable guardian can be named if such a person can be found. A public guardian has the same powers of other substitute decision makers with a few notable exceptions. In most provinces a public guardian is not entitled to give consent to withdraw lifesaving treatment if this was not specified in an advance directive.16, 101 This position does not remain entirely unchallenged, but it was clearly defined in 1999 in Alberta when a man in a persistent vegetative state after a traumatic accident had life support withdrawn only after the courts deliberated. Kenneth Durksen had a public guardian appointed as substitute decision maker after being in a persistent vegetative state for several months. Based on information from his friends co-workers and family, it became clear that despite the fact that Mr. Durksen had no written or explicit advance directive, he would not have wanted to be maintained on life support with no chance of recovery. Acting on his behalf, and in his best interests, the public guardian acknowledged that life sustaining treatment should be withdrawn but the guardian was reluctant to authorize this until it had applied to the courts to sanction this. A decision was rendered that indeed endorsed the position that the public guardian does not have the authority to withdraw treatment, and that such an application was, in this case, rightly, assessed by the courts (and that these cases should, furthermore, continue to be evaluated by the courts).101, 102 Public guardian legislation has also been criticized as being too rigid in the sense that it is an all-or-none phenomenon, with the guardian making all decisions or being entirely out of the decision loop, but nothing in between.16 So while public guardianship is the surrogate of last resort, for many reasons it is less than ideal, and a substitute decision maker closer to the patient is ideally sought.
Establishing who should act as substitute decision maker is one issue, but another issue emerges: once a surrogate is found, just how should these decision makers decide. And this is a topic more squarely in the realm of ethical theory than law and policy. Canadians do not depart from the conventional wisdom on this front. When an advance directive exists, little interpretation is necessary, and there is no need for substitution, the patient’s wishes are obeyed inasmuch as is practicable. The authenticity of advanced directives as a reflection of a person’s wishes, and the fidelity with which a surrogate decision maker holds to the authentic wishes of that person, is a topic that is not completely resolved in the ethical literature (and to some extent this will be discussed in a broader treatment of end of life issues in Chapter 3). When directives do not exist, surrogates acting on behalf of patients should strive ideally for a “substituted judgment” or a judgment based upon what the patient would have wanted. If there is no clear notion of just what that means, that is, if the surrogate has no clear idea of what the patient would have wanted, the default is the “best interest” standard by which the surrogate would decide according to what a reasonable person would desire in this situation or what is clinically indicated. 33 It is hoped that this “best interest” decision would still be informed by an intimate knowledge of what kind of goals and values the patient retained in his or her life. This bioethical nomenclature is increasingly finding its way into the law and policy in Canada32, evidence perhaps that the legal instruments are indeed a reflection of principled ethics and properly informed by them.
While the decision making process is straight forward in theory, it is not always so in practice. There are frequent disagreements and disputes among the stakeholders; the surrogate, the family and loved ones, and the health care team. Resolutions are complex, and a discussion of how to accomplish this will be left to other texts. However, a few practical considerations can be noted. When disputes and differences of opinion arise, consensus is often sought through dialogue and team and family meetings. When this breaks down, hospital ethics boards are consulted. Ultimate recourse is to the courts and this will be discussed in future chapters where relevant. One unique answer to this problem is in the form of the Ontario Consent and Capacity Board, which was introduced above in relation to capacity determination. This board also decides on substitute decision maker consent issues when conflicts arise. Surrogates or physicians can apply to the board to decide on issues. Notably, if a physician decides that a surrogate is not making decisions based on the physician’s conception of what the best interest or substituted judgment should be, the physician can apply to the board and have them instruct the surrogate.103 While disagreements between substitute decision makers and the medical team have recourse to the courts and legal bodies such as the Consent and Capacity Board, there have been no cases to test just how to resolve differences of opinion between family members or between the surrogate decision maker and the rest of the family and loved ones.33
This has been a discussion of the ethics of patient care. Patient care alliances are often referred to as the “doctor patient relationship”, but would be more accurately described as a “provider-patient relationship” and it takes many forms, as care is provided for patients in manifold ways. The nature of this relationship is behind much of the bioethical theory and literature of the last few decades. Some of the most acute ethical dilemmas issue forth from the way providers interact with those they have a fiduciary relationship to.
This chapter first examined the way provider patient relationships are defined by codified ethics and how that relates to law and policy. The Canadian Medical Association Code was examined in some detail as an example of codified ethics for health professions in Canada. Moving from ethical theory to codified ethics and on to law and policy, the discussion then turned to an introduction to health care law and the nature of the self-regulating health care professions in Canada.
Much of the dialogue and analysis in the bioethics literature that surrounds the physician patient relationship connects back to the principle of respect for autonomy. The notion of Principlism was introduced and the way autonomy fits within that framework was discussed. This respect for autonomy is the foundation for the other topics of this chapter. But before turning to those topics, an elaboration on the concept of capacity was made. A definition of capacity, both in the bioethical and medico-legal sense, was discussed and this concept was discussed in relation to competence. Capacity is a fluid entity that fluctuates with time and situation and is largely medically established and oriented, whereas competence is by and large, a legal term and a much more static entity that is determined in the legal arena as being present or not. It was established that capacity issues exist at transition zones between a person’s having and not having capacity. Defining this concept was seen to be simpler than applying this concept to the care of patients—determining who should legitimately assess capacity, and then how that assessment should be acted upon, is a complicated affair.
Central to the respect for persons and a respect for autonomy is the notion of informed consent. The requirement of informed consent was discussed (as well as the times when consent can be dispensed with), but more attention was paid to just what it means to be informed. The notion of the “reasonable person” standard in relation to informed consent was considered, as well as some of the criticisms of this standard. Childhood is a significant transition zone where many ethical issues such as capacity, consent, as well as duties to trespass on privacy, and duties to protect and treat, all occur. For this reason, the “age of consent” was discussed at some length. It was seen that capacity to decide is something that develops over time and that there is no defined lower limit to age of consent, even though legislation in the different provinces does set out (variable) ages after which consent must be mandatorily sought from the child, or young adult.
Privacy (a property of persons or groups) and confidentiality (a concept that applies to information) were introduced by way of a working definition for these terms. The ways and means of protecting privacy (including privacy legislation) was discussed and the nature of the health record introduced. Public health ethics was also introduced (and alluded to at key points throughout this section and the next). This set the stage for a meaningful discourse on confidentiality—or more to the point—the breaching of confidentiality. Breaches of confidentiality take many shapes and many of these were examined. First, the topic of reporting and notification saw a return to issues of child protection, but also an enumeration of the many aspects of Canadian life that are reportable including birth, disease, death and many things in between. A discussion of disclosing and warning followed, and the paradigmatic example of HIV was used to demonstrate many facets of this topic. The notion of a “duty to warn” was developed in relation to HIV and genetic diseases, and ultimately, the way Canada has found its way to firm guidelines and regulations in this complex arena was revealed.
Involuntary treatment was then examined most especially in the context of treating persons who lack capacity (such as children, mentally ill, and cognitively impaired). Canada has the means to impose treatment on patients with the use of legal instruments such as the mental health laws of the various provinces. These rules and policies are designed not as punitive mechanisms but as means to restore health or ensure the welfare of broader society, they have very strict limits. This chapter also looked at opting out of immunization and the management of TB (an old disease with a new twist). Quarantines have rarely been an issue in Canada because of its social stability, strong governance, high standard of living and robust health care system. But every nation has its challenges that redefine and reshape it, for Canada, in relation to pandemic planning and quarantine issues, this challenge came in the form of the SARS outbreak in 2003.
The final topic of discussion was a look at substitute decision making. “Who is a legitimate decision maker?” was the first question examined, and it was revealed that in the common law the only answer seems to be “The state”. The inadequacy and unsatisfactory quality of this answer has prompted most provinces to adopt specific legislation in an attempt at a much better solution. After elaborating on the nuances of who has claim on this role in Canada, discussion finished with an examination of how these surrogates should make decisions.
The relationship between a health care provider and his or her patient is a very special and complicated one. An understanding of the concepts and problems that attach to that relationship are fundamental to an understanding of the topics that follow in subsequent chapters.
1. In an attempt to focus on the elements germane to this discussion, a digression will not be made into the semantics of these various terms or the appropriateness of these terms. In that same vein, broadly and conceptually speaking, this topic and the concepts within it is known as the Doctor – Patient or Physician – Patient Relationship; this is merely a term of convenience and employed as such. In this age of advancing medical technology and with the emergence of unique and novel forms of health care, it is widely recognized and indeed clearly understood by the present author that the “primary health care providers” take many different forms. The use of the term “doctor patient relationship” should be understood to include the relationship between a patient or client and providers such as nurse practitioners, psychologists, osteopaths, chiropractors, and the other various primary care providers chosen by individuals.
2. American Medical Association. Council on Ethical and Judicial Affairs. Code of medical ethics : current opinions with annotations. 2008-2009 ed. Chicago, Ill.: AMA Press; 2008.
3. Canadian Medical Association. Canadian Medical Association Code of Ethics. 2004. http://www.cma.ca/index.cfm/ci_id/53556/la_id/1.htm. Accessed 28 February 2011.
4. These policies and guidelines can be found at http://www.cma.ca/index.cfm/ci_id/53563/la_id/1.htm on the CMA website.
5. The College of Family Physicians of Canada. By-laws of The College of Family Physicians of Canada 2006.
6. Canadian Nurses’ Association. Code of ethics for registered nurses. Ottawa: Canadian Nurses’ Association; 2008: http://www.cna-nurses.ca/CNA/documents/pdf/publications/Code_of_Ethics_2008_e.pdf. Accessed 28 February 2011.
7. Boards of Directors of the Canadian Healthcare Association the Canadian Medical Association the Canadian Nurses Association and the Catholic Health Association of Canada. Joint Statement on Preventing and Resolving Ethical Conflicts Involving Health Care Providers and Persons Receiving Care. 1999. http://policybase.cma.ca/dbtw-wpd/PolicyPDF/PD99-03.pdf. Accessed 28 February 2011.
8. Epps T. Chapter 2: Regulation of health care professionals. In: Downie JG, Caulfield TA, Flood CM, eds. Canadian health law and policy. 3rd ed. Toronto: LexisNexis Canada; 2007:69-100.
9. This self regualtion arrangement has been criticized on many levels but this goes well beyond the scope of this text. The legitimacy of self regulation is predicated on the notion that the profession and its representatives are the only persons with sufficient capacity and insight to provide the service. Critics would argue this gives broad sweeping powers to the professions and its members and opens up the potential to corrupt the institution and potentially harm society.
10. United States. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont report : ethical principles and guidelines for the protection of human subjects of research. Bethesda, MD; Washington: The Commission; 1978.
11. Beauchamp TL, Childress JF. Principles of biomedical ethics. New York: Oxford University Press; 1979.
12. Beauchamp TL, Childress JF. Principles of biomedical ethics. 6th ed. New York: Oxford University Press; 2009.
13. For the purposes of this text, these terms will be used interchangeably albeit with a recognition that they can represent different things in different situations. This is not the forum to air opinions over these sometimes prickly terms.
14. Buchanan A. Mental capacity, legal competence and consent to treatment. J R Soc Med. Sep 2004;97(9):415-420.
15. Molloy W, Strang D, Darzins P. Capacity to decide : a practical guide on how to measure capacity for health, personal care, finance & property, advance directives, driving, sexuality & intimacy, wills and power of attorney. Troy, Ont.: New Grange Press; 1999.
16. Madam Justice Allan. Capacity Assessments in British Columbia – some thoughts on educating the decision makers. Elder Law Review. 2006;4.
17. Information about the board and its mandate can be obtained at its website: http://www.ccboard.on.ca/scripts/english/index.asp .
18. Canadian Paediatric Society. Position statement: Advance care planning for paediatric patients. 2008. http://www.cps.ca/english/statements/b/b08-02.htm. Accessed 28 February 2011.
19. Canadian Paediatric Society. Position statement: Treatment decisions regarding infants, children and adolescents. 2004 (Revised 2009). http://www.cps.ca/english/statements/b/b04-01.htm#Decision-making%20capacity. Accessed 28 February 2011.
20. Doig C, Burgess E. Withholding life-sustaining treatment: are adolescents competent to make these decisions? CMAJ. May 30 2000;162(11):1585-1588.
21. Veatch RM. Chapter 5: Respect for Persons. The basics of bioethics. 2nd ed. Upper Saddle River, N.J.: Prentice Hall; 2003:xvii, 205 p.
22. The corollary to this rule is that once a person regains capacity, even in an emergency situation, that person can withdraw consent to treat and the treatment must be stopped.
23. Etchells E, Sharpe G, Walsh P, Williams JR, Singer PA. Bioethics for clinicians: 1. Consent. CMAJ. Jul 15 1996;155(2):177-180.
24. Examples include Health Care and Consent Law 1996 c 2, s 25 of Ontario; The Health Care Directives Act C.C.S.M. c. H27 of Manitoba; the Health Care (Consent) and Care Facility (Admission) Act of BC to name only a few.
25. Reibl v. Hughes,  2 S.C.R. 880, (SCC 1980).
26. Capen K. Physicians and the minefield surrounding informed consent. CMAJ. Aug 15 1996;155(4):458-460.
27. Hopp v. Lepp,  2 SCR 192, (SCC 1980).
28. Robertson G. Informed consent ten years later: the impact of Reibl v. Hughes. Can Bar Rev. Sep 1991;70(3):423-447.
29. Arndt v. Smith, (1994) 21 C.C.L.T. (2d) 66, (BC Court of Appeal 1994).
30. Capen K. Supreme Court reaffirms landmark informed-consent ruling in chickenpox case. CMAJ. Sep 1 1997;157(5):553-554.
31. Etchells E, Sharpe G, Burgess MM, Singer PA. Bioethics for clinicians: 2. Disclosure. CMAJ. Aug 15 1996;155(4):387-391.
32. Picard EI, Robertson GB. Chapter 2: Consent. Legal liability of doctors and hospitals in Canada. 4th ed. Toronto: Thomson Carswell; 2007:43-121.
33. Gilmour J. Chapter 11: Death, dying, and decision making about the end of life care. In: Downie JG, Caulfield TA, Flood CM, eds. Canadian health law and policy. 3rd ed. Toronto: LexisNexis Canada; 2007:436-478.
34. Etchells E, Sharpe G, Elliott C, Singer PA. Bioethics for clinicians: 3. Capacity. CMAJ. Sep 15 1996;155(6):657-661.
35. Gillick v West Norfolk and Wisbech Area Health Authority and another  3 All ER 402 (HL). This ruling found that a girl under the age of 16 could give consent for medical treatment (in this case for receiving oral contraceptives), and that in such cases where the minor had capacity, his or her autonomy should be respected irrespective of his or her parents wishes.
36. A.C. v. Manitoba (Director of Child and Family Services), 2009 SCC 30. Decided 26 June 2009.
37. The Child and Family Services Act, C.C.S.M. c. C80 (1985).
38. Child and Family Services Act, C.C.S.M. c. C8 s. 25(8-9).
39. Schachter D, Kleinman I, Harvey W. Informed consent and adolescents. Can J Psychiatry. Aug 2005;50(9):534-540.
40. For much more on this fascinating subject and valid attempts to define its boundaries and issues see: Holland S. Public health ethics. Cambridge, UK ; Malden, MA: Polity; 2007; and Bayer R, Beauchamp DE. Public health ethics : theory, policy, and practice. Oxford ; New York: Oxford University Press; 2007.
41. Childress JF, Faden RR, Gaare RD, et al. Public health ethics: mapping the terrain. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics. Summer 2002;30(2):170-178.
42. Upshur RE. Principles for the justification of public health intervention. Can J Public Health. Mar-Apr 2002;93(2):101-103.
43. This is making a presumption about a simplified conception of privacy and the right to privacy. Ethicists are right to point out that the right to privacy (like so many rights) is in fact a “bundle” of rights and not so easily characterized and analyzed. This discussion will forego a description of this “bundle” and discuss matters from a broad and simple approach.
44. Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (U.K.).
45. Privacy Act (R.S., 1985, c. P-21), (1985).
46. Access to Information Act, R.S.C. 1985, c. A-1, (1985).
47. Personal Information Protection and Electronic Documents Act (2000, c. 5), (2000).
48. This information is found on the Office of the Privacy Commissioner of Canada website at: http://www.priv.gc.ca/fs-fi/02_05_d_15_e.cfm .
49. Ries NM, Moysa G. Legal protections of electronic health records: issues of consent and security. Health Law Rev. 2005;14(1):18-25.
50. McInerney v. MacDonald  2 S.C.R. 138, (Supreme Court of Canada 1992).
51. An example of this is the section, “Medical Records in the Private Physicians’ Offices”, part of the extensive “Physicians’ Resource Manual” updated regularly by the College of Physicians and Surgeons of BC (it can be viewed at: https://www.cpsbc.ca/publications-resources/resource-manual ).
52. Government of Canada. Criminal Code of Canada. R.S.C. 1985, c C-46, as ammended.Section 215 (1).
53. Necessary health care is,of course, a very open ended term, and can include such things as refusing to give consent for an operation, blood transfusion, cancer treatment etc. The parents can refuse to consent to these things for themselves but cannot refuse to allow an acceptable standard treatment for their dependent children.
54. Children are not always taken out of or returned to families, these laws pertain to any person that is the legal guardian of children, family or otherwise.
55. The Notifiable Diseases Summary can be viewed at the Public Health Agency of Canada website: http://www.phac-aspc.gc.ca/publicat/ccdr-rmtc/04vol30/dr3021b-eng.php .
56. The Canada Communicable Disease Report can be found on the Public Health Agency website: http://www.phac-aspc.gc.ca/index-eng.php .
57. For the record. CMAJ. August 12, 2008 2008;179(4):316-.
58. Information on these sites can be obtained through the Public Health Agency of Canada http://www.phac-aspc.gc.ca/aids-sida/info/4-eng.php .
59. According to research by the Henry J Kaiser Family Foundation http://www.kff.org/hivaids/upload/Updated-Fact-Sheet-HIV-Testing-in-the-United-States.pdf .
60. Grant I. The boundaries of the criminal law: the criminalization of the non-disclosure of HIV. Dalhousie Law Journal. 2008;Spring 2008(31).
61. R v. Cuerrier,  2 SCR 371, (Supreme Court of Canada 1998).
62. Symington A. Criminalization confusion and concerns: the decade since the Cuerrier decision. HIV AIDS Policy Law Rev. May 2009;14(1):1, 5-10.
63. R v Aziga, at the time of this writing this case is still open to appeal, and it is certain the final page has not been turned on this case.
64. One would be remiss to fail to mention a key concept in public health ethics that concerns such as these hinge on; and that is the “Harm Principle.” This fundamental concept is attributed to John Stuart Mill: “That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others.” [Mill J. On Liberty,1859] This is, in essence, a justification for intervention by the state that warrants infringements on personal autonomy in the name of harm prevention or reduction. In public health practice this is most commonly considered in the context of a duty to protect the public from harm.
65. A notable exception may be found in Pittman Estate v. Bain (1994) 112 DLR (4th) 258 Ontario Central Division, (Ontario Supreme Court 1994) wherein Dr Bain failed to notify his patient that he could be HIV positive through contaminated blood. In this case the patient was HIV positive and the doctor was found liable for damages to his patient but also, by extension to the patient’s wife whom he also, indirectly, failed to warn.
66. HIV is being used as an exemplary and archetypal case more for the purposes of demonstration of ethical issues and the contour of law and policy in Canada, but the utility of this has its limits as HIV becomes embued with more peculiarities that conjure new ethical problems. Some of these problems have to do with the changing nature of the disease which, on one hand, represents dangers of transmission if untreated, and on the other hand, relatively minimal risk of transmission if well treated. One new issue is now becoming, just where to draw the line in a duty to disclose or warn: does one have an obligation to disclose if one’s virus is uncontrolled but not if one’s virus is well treated (undetectable in the blood)? There are a host of new problems that attach to HIV specifically that are beyond the scope of this text.
67. Gold J. To warn or not to warn? Genetic information, families, and physician liability. McGill Medical Journal. 2004;8(1):72-78.
68. Lacroix M, Nycum G, Godard B, Knoppers BM. Should physicians warn patients’ relatives of genetic risks? CMAJ. Feb 26 2008;178(5):593-595.
69. Godard B, Hurlimann T, Letendre M, Egalite N. Guidelines for disclosing genetic information to family members: from development to use. Fam Cancer. 2006;5(1):103-116.
70. Pate v, Threlkel. 661 So.2d 278, (Florida 1995).
71. Safer v. Estate of Pack, 677 A.2d, (NJ Superior Court App Div 1996).
72. Molloy v, Meier. 679 NW.2d 711, (Minnesota 2004).
73. This distinction is important inasmuch as it can mean that confidentiality is not breached at all, and the remedy is to simply detain the patient.
74. Canadian Psychiatric Association. The Duty to Protect. CPA Position Paper. 2002. http://publications.cpa-apc.org/media.php?mid=154&xwm=true. Accessed 28 February 2011.
75. Ferris LE, Barkun H, Carlisle J, Hoffman B, Katz C, Silverman M. Defining the physician’s duty to warn: consensus statement of Ontario’s Medical Expert Panel on Duty to Inform. CMAJ. Jun 2 1998;158(11):1473-1479.
76. Tarasoff v. Regents of the University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 Cal. Rptr. 14, (California Supreme Court 1976).
77. Carver PJ. Chapter 10: Mental health law in Canada. In: Downie JG, Caulfield TA, Flood CM, eds. Canadian health law and policy. 3rd ed. Toronto: LexisNexis Canada; 2007:399-436.
78. Gray JE, O’Reilly RL. Clinically significant differences among Canadian mental health acts. Can J Psychiatry. May 2001;46(4):315-321.
79. R v. Ross (1993), 119 NSR (2d) 177 (CA), (Nova Scotia Court of Appeal 1993).
80. Smith v. Jones,  1 S.C.R. 455, (Supreme Court of Canada 1999).
81. Evans KG, Gowling Lafleur Henderson LLP (General Legal Counsel). A medico-legal handbook for Canadian physicians (Sixth edition). Ottawa, Ontario: Canadian Medical Protective Association; 2005.
82. von Tigerstrom B. Chapter 12: Public health. In: Downie JG, Caulfield TA, Flood CM, eds. Canadian health law and policy. 3rd ed. Toronto: LexisNexis Canada; 2007:479-508.
83. Menzies D, Tannenbaum TN, FitzGerald JM. Tuberculosis: 10. Prevention. CMAJ. Sep 21 1999;161(6):717-724.
84. Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, being Schedule B to the Canada Act 1982 (U.K.). s1.
85. Ries NM. Public health law and ethics: lessons from SARS and quarantine. Health Law Rev. 2004;13(1):3-6.
86. Canada. National Advisory Committee on SARS and Public Health., Naylor CD. Learning from SARS : renewal of public health in Canada : a report of the National Advisory Committee on SARS and Public Health. Ottawa: National Advisory Committee on SARS and Public Health; 2003.
87. In this text the terms “substitute decision maker” and “surrogate decision maker” are used interchangably. The prefixed “temporary” (as in “temporary substitute decision maker”) is often also used interchangeably, but herein a more literal interpretation will be adopted and such a term will be used when the substitute truly is temporary, and the incapacity expected to pass.
88. The topic of Advanced Directives will be discussed in Chapter 3: End of Life Issues.
89. Lazar NM, Greiner GG, Robertson G, Singer PA. Bioethics for clinicians: 5. Substitute decision-making. CMAJ. Nov 15 1996;155(10):1435-1437.
90. Straus S, MD MSc, Stelfox T, MD PhD. Whose life is it anyway? Capacity and consent in Canada. CMAJ. November 20, 2007 2007;177(11):1329-.
91. Dependent Adults Act, R.S.A. 2000, c. D-11, (2000).
92. Health Care (Consent) and Care Facility (Admission) Act, R.S.B.C. 1996, c. 181, (1996).
93. Advance Health Care Directives Act, S.N.L. 1995, c. A-4.1, (1995).
94. Health Care Consent Act, 1996, S.O. 1996, c. 2, Sch. A, (1996).
95. Consent to Treatment and Health Care Directives Act, R.S.P.E.I. 1988, c. C-17.2, (1988).
96. Care Consent Act, S.Y. 2003, c. 21, Sch. B, (2003).
97. Hospitals Act, R.S.N.S. 1989, c. 208, (1989).
98. Civil Code of Québec, R.S.Q. c. C-1991, (1991).
99. Advance directives for resuscitation and other life-saving or sustaining measures. CMAJ. Mar 15 1992;146(6):1072A-B.
100. Bravo G, Gagnon M, Wildeman S, Marshall DT, Paquet M, Dubois MF. Comparison of provincial and territorial legislation governing substitute consent for research. Can J Aging. Fall 2005;24(3):237-250.
101. Godlovitch G, Mitchell I, Doig CJ. Discontinuing life support in comatose patients: an example from Canadian case law. CMAJ. April 26, 2005 2005;172(9):1172-1173.
102. In the Matter of Robert Kenneth Durksen, Dependant Adult DA06-02070, (Surrogate Court of Alberta 1999).
103. Peppin P. Chapter 5: Informed consent. In: Downie JG, Caulfield TA, Flood CM, eds. Canadian health law and policy. 3rd ed. Toronto: LexisNexis Canada; 2007:189-221.