New technologies are, in many ways, making life more efficient and more productive. Ironically, these same technologies are making life more complex and precarious. In particular, medical technologies--in vitro fertilization, transplantation, stem-cell therapies, advanced life-support techniques--are proving to be a double-edged sword by increasing treatment options and expectations while simultaneously exciting ethical concerns about how they affect our humanity and personhood. Additionally, and importantly for this paper, we now face the ambiguous circumstance where advances in medical technology have extended our life-preserving capability (that is, our ability to maintain a functioning body), but have failed to increase, to the same extent, our healing capability (that is, our ability to restore functionality or cure the underlying debilitating condition).
Patients, families, treating physicians, and lawyers are increasingly presented with complex issues and difficult decisions that tangle healthcare desires, legal rights and duties, and ethical values. Physicians, troubled when competent patients refuse treatment deemed vital (a well-entrenched right (1)), are doubly challenged when confronted with incompetent patients represented by substitute decision-makers (SDMs) demanding treatment deemed "medically futile." (2) Inevitably, when the way is unclear and the parties disagree as to the right course of action, the law must intercede. At the risk of insinuating lawyers into every aspect of life (and death), it seems obvious that the legal profession has an important role to play at the endgame of life.
Although few people adequately discuss their end-of-life desires, and fewer still execute advance directives (ADs), intractable disputes over withholding or withdrawing life support are relatively rare. (3) However, given the increasing longevity and advancing age of populations and the ongoing life-sustaining/cognition-restoring deficit, such disputes will become more prevalent with the result that lawyers will more frequently be called upon to represent families or health authorities when treatment disputes arise. Given that these disputes are a source of tremendous distress for all involved, (4) as tragically demonstrated by the nine-year legal battle for control over Yerri Schiavo's future, (5) lawyers have an obligation--to medical and judicial institutions, to clients and their families, and to themselves--to understand the legal and ethical issues implicated.
Given the above, this paper explores the current legal state in Canada of three core aspects of managing end-of-life situations, with reference to the United Kingdom (U.K.) where appropriate. (6) First, it briefly considers the consent model that has developed in Western medical practice, focusing on its capacity element, which is particularly significant in end-of-life settings. Second, it explores the position of ADs, which extend consent powers beyond the loss of capacity (and death). Third, it explores the operation of "best interests" assessments, an essential concept for shaping end-of-life decisions when the patient lacks capacity and has no applicable AD. In the course of exposing and critiquing these concepts, it highlights the ethical values that back them. (7)
The analysis is structured around the following statutes: the Alberta Personal Directives Act, (8) the Manitoba Health Care Directives Act, (9) and the Ontario Health Care Consent Act (10) and Substitute Decisions Act (11) (which combine to govern this area). These constitute a reasonable sample of Canadian jurisdictions and might together be considered representative of Canadian practices. (12) Four recent end-of-life cases emanating from these jurisdictions will also be considered: Scardoni v. Hawryluck, (13) Re Grover, (14) Jin (next friend of) v. Calgary Health Region, (15) and Golubchuk v. Salvation Army Grace. (16) The paper concludes by offering some practical suggestions for medical law practitioners giving advice in these highly emotive situations.
CONSENT OF THE (AILING) PATIENT: CAPACITY TO CONSENT
Medical law, like medicine itself, is concerned with human flourishing as well as personal integrity. Paternalism has gradually given way, hastened by medical research abuses in the last century, and a more patient-centred approach now prevails. Medical law now uniformly imposes on clinicians the "consent model," which demands that patients be empowered to make, or participate in, treatment decisions. Under this model, individuals must consent before any treatment (any physical touching) can occur. In Starson v. Swayze, an important Canadian case, the Supreme Court of Canada articulated the principle as follows:
Ordinarily at law, the value of autonomy prevails over the value of effective medical treatment. No matter how ill a person, no matter how likely deterioration or death, it is for that person ... to decide whether to accept a proposed medical treatment. (17) Thus, consent must be sought and patients can refuse to consent, even when the inevitable consequence is death. (18) The consequences of unauthorised touching can be a finding of assault or battery (and civil or criminal liability).
Conversely, as noted in R. (on the application of Burke) v. General Medical Council, (19) where patients with capacity wish to be kept alive by ventilation or artificial nutrition and hydration, there can be no question about the provision of same. There can be no clinical indication to the contrary unless a decision has been taken that the life should come to an end, and that is not a decision that can lawfully be taken for competent patients who express the wish to remain alive. It should, however, be noted that, while the consent model allows individuals to demand medical assistance, they may not necessarily demand a specific treatment (which may not be clinically indicated or available). (20) Accordingly, while individual decision-making, with its myriad non-medical motivators, has risen to great prominence, medical judgment is still important. This is nowhere more readily demonstrated than in end-of-life settings.
The consent model, with its capacity prerequisite, protects self-determination and bodily integrity and is therefore founded on two core ethical values: human dignity and autonomy. Dignity encompasses the idea that human beings, individually and collectively, are unique, deserving of honour and respect as amongst one another, and should be elevated above non-human species. (21) It contributes to our shared sense of being and our sense of inherent or natural rights (that is, rights that are neither specifically granted nor legitimately violated by society), and it has informed the norms espoused by numerous international instruments. (22) Autonomy is grounded in respect for the worth of human beings: it encompasses physical, psychological, and legal liberty and the right to be free from controlling influences (of others and of personal limitations) with respect to same. (23) Indeed, the Ontario legislation declares the enhancement of autonomy as one of its purposes and the Supreme Court of Canada specifically considered it in Starson. (24) It can thus be said that dignity and autonomy have found a legal voice in the end-of-life decision-making framework. The consent model, with its insistence on capacity and its mechanisms for testing same, might even be described as the ultimate expression of these ethical values.
The Manitoba and Ontario acts specifically endorse the consent model, (25) whereas the Alberta act assumes the model without reference. All the statutes are in substantial agreement as to the conceptualization and formulation of capacity: people are entitled to make decisions when they are not labouring under mental or psychological conditions that negate their capability. As evidenced in this legislation, the cornerstone of the consent model is the individual's capacity to consent. Infirmity can be quite pronounced when end-of-life decisions are being made, so there is a particular need to ensure the capacity of patients (and to protect those lacking capacity). The common law presumes capacity (in adults) and the Manitoba and Ontario acts retain that presumption. Those challenging capacity must prove its absence on the balance of probabilities. (26) A person is deemed to have capacity when he or she is able to: understand the information that is relevant to making a treatment decision and appreciate the reasonably foreseeable consequences of a decision or lack of decision. (27)
In the subject cases, capacity was not controversial--none of the patients had it. In Scardoni, the 81-year-old patient with advanced Alzheimer's, aspiration pneumonia, recurrent lung infections, painful bedsores, and reflection contractures, was non-responsive and unable to recognize people. In Grover, the previously partially disabled 81-year-old patient suffered a stroke that left her non-communicative and quadriplegic. In Jin, the previously healthy 66-year-old patient fell and suffered a severe head injury causing unconsciousness and was treated with brain inserts (to reduce pressure and ensure blood flow). In Golubchuk, the patient also suffered a closed head injury: he neither ambulated nor spoke, though there was some dispute over the level of his brain function as his treatment team was claiming non-responsiveness to stimuli. All of the patients, save Mrs. Holland, the patient in Scardoni, were on ventilators and required tube-feeding. None were in a position to actively participate in decisions concerning their treatment. As none of the cases addressed capacity in any detail, they contain no pertinent discussion or development of the relevant values.
ADVANCE DIRECTIVES AND THE (INCAPAX) PATIENT: FUTURE CONSENT
Patients who have lost capacity may have left instructions or outlined the scope and limits of their future consent in the form of an AD...