Determining best interests in end-of-life decisions.

• Author: Jones, Sarah

1. INTRODUCTION II. THE CONSENT AND CAPACITY BOARD III. SUBSTITUTES FOCUS ON THE PATIENT'S VALUES AND BELIEFS IV. THE BOARD'S INABILITY TO PROCESS THE FAMILY'S EVIDENCE V. RE:DP CORRECTLY WIDENS THE SCOPE OF BEST INTERESTS BEYOND CLINICAL INTERESTS VI. TWO STEPS TOWARDS BRIDGING THE GAP BETWEEN THE HOSPITAL'S AND SUBSTITUTE'S POSITIONS VII. CONCLUSION I. INTRODUCTION

   It is hard to visualize a more private and emotional moment than a family and friends huddled around an ailing patient "in a hospital. Individuals in the unenviable position of ascertaining how the incapacitated patient would have wanted to die are faced with a profound decision. It is not a decision that will soon be forgotten.

   As Justice Abella wrote in a case concerning a Jehovah's Witness' decision to reject a blood transfusion, such a decision "engages the most intensely complicated constellation of considerations and its consequences are inevitably profound." (1)

   In Ontario, where a family and a hospital disagree about how an ailing patient should be treated at the end of her' life (where the ailing relative is not able to speak for herself), the parties turn to the Consent and Capacity Board to resolve the dispute. The Board has decided a multitude of end-of-life cases since its creation in 1996.

   This paper considers the role the Board plays in adjudicating emotional disputes between families and hospitals. The Board's governing legislation does not provide guidance on how to weigh evidence presented by the family (generally emotional evidence of the patient's character) against the evidence presented by the health care professionals (generally clinical outcomes). Appellate courts have indicated that weighing this evidence is a role for the Board, yet they have refrained from providing guidance:

   The task of determining where a patient's best interests lie when they [factors referred to in the legislation] tend to support different overall conclusions may be of considerable difficulty and complexity. [...] The difficult balancing exercise is for the Board, and not for the court, to perform ... (2) This passage indicates that the Board's role is "balancing" rather than determining the winning argument. The Board's balancing does not appropriately weigh the family's values and beliefs. The lack of legislative guidance has led to a situation in which the Board is unable to digest the emotional appeals of families, who have no further evidence to sway the Board. This paper argues that the Board should validate the evidence presented by the family and substitute by empowering the evidence rooted in care and relationships.

   The first section in this paper sets out the legislative authority of the Board. The second section reviews the existing decisions and demonstrates the Board's difficulty weighing the family's evidence along side the hospital's clinical evidence. While many health care decisions are based exclusively on clinical calculations, this section argues that exclusively rational reasoning is not suitable for end-of-life decisions. The question then remains how the emotional evidence can be appropriately valued.

   The third section sets out the reasoning in the 2010 Board decision Re:DP and suggests that this decision provides a means of empowering the role of the family without altering the existing statutory scheme. However, while Re:DP empowers the family's position, it does not provide a successful means for Boards to balance the relationship-based evidence presented by the substitute decision maker and family and the clinical evidence presented by physicians. In light of this problem, the fourth section suggests that the solution is not to reject the principle of best interests, but rather to improve the communication between the hospital and family. (3) This section sets out two steps for the Board to take when evaluating the incommensurable evidence presented by the hospital, the family and substitute.

   Finally, while this paper suggests that there is room for improvement within the Board, this does not threaten the value of the Board. The experiences in other provinces demonstrate the difficulty of addressing end-of-life decisions efficiently in the court system, and for this reason the Board's efficiency should be lauded. (4) It has also been correctly noted that tribunals are "better suited than courts" at evaluating end-of-life decisions because specialized tribunals develop "greater expertise" and are "less formal [and] more flexible" with rules of procedure. (5)

2. THE CONSENT AND CAPACITY BOARD

   The Ontario Consent and Capacity Board (Board) is a quasi-judicial tribunal established in 1996 under the Health Care Consent Act (the "Act"). (6) The Board was established in the wake of the Ontario Court of Appeal's decision, Fleming v Reid, which found that incapable patients had the right, during periods of mental capacity, to make decisions regarding their own treatment. These decisions would be upheld during subsequent periods of incapacity. (7)

   The Board's main functions are adjudicating disputes concerning capacity, consent, involuntary patient committal, and substitute decision-making. (8) Board hearings are heard in front of panels of one, three or five members. (9) A lawyer is the presiding member and panels of three or five members also include a psychiatrist and a member of the public. (10) New panel members attend several hearings and are trained by senior members for two days. (11) To ensure impartiality, none of the panel members is affiliated with the health care centre involved. (12)

   Disputes are generally between patients and health care centres, including hospitals and psychiatric facilities. The hospital (represented by a physician) generally commences applications concerning end-of-life decisions (though the family is equally able to bring an application). The hearing must be held within seven days of the application, and the reasons are delivered within one day of the hearing. (13) Urgent matters (that is disputes concerning patients in intensive care units) must be heard within twenty-four hours of the application. (14) The location of the hearing is as near to the patient as possible; often hearings take place in hospitals and psychiatric facilities. (15) Section 80 of the Act provides that parties to a Board hearing may appeal the decision to the Ontario Superior Court of Justice.

   This paper focuses on cases in which the Board reviews decision made by substitute decision-makers (the substitute) who are asked to consent to withholding or withdrawing life-prolonging treatment. The patient may, while capable, appoint a substitute (generally through an advanced directive). If the patient has not indicated his or her wishes, the substitute is appointed in accordance with section 20 of the Act. The Board may overrule or replace substitutes if the substitutes do not comply with their role. (16) Such decisions include whether to implement a do not resuscitate (DNR) order and whether to withhold or withdraw feeding tubes, ventilator support, central lines for medication and dialysis. For the purpose of this paper, these decisions are referred to as "end-of-life" decisions, though if the patient is in a stable condition (that is a permanent vegetative state) the term may beg the question.

   Since 1996, the Board has heard 17 end-of-life cases. (17) The decisions in these cases can be distilled to determinations of the patients' best interests: if a substitute's decision is in the patient's best interests, the decision is upheld. Section 21(2) of the Act determines that patients' best interests include the patients' wishes, values, beliefs and clinical welfare. The case law indicates that the patients' families and substitutes most often present evidence of the patients' values and beliefs and relying on this evidence to argue in favour of life-prolonging treatment. (18) On the other hand, the hospital (represented at the hearings by a physician) presents clinical evidence and (in all cases except in Re:C) argue against life-prolonging treatment.

   In all cases, except two, the Board determined that it was in the patient's best interests to withdraw or to withhold life-prolonging treatment and substitutes were advised to adjust their decisions accordingly. The two exceptions are Re:C and Re:DP. (19) In Re.C the patient was likely to recover, whereas in every other end-of-life case the patient's death was imminent or the patient was in a permanent vegetative state and unlikely to recover meaningfully.

3. SUBSTITUTES FOCUS ON THE PATIENT'S VALUES AND BELIEFS

   Substitutes must comply with section 21 of the Act when deciding whether to provide or to refuse consent to a proposed treatment plan, and similarly the Board relies on section 21 to evaluate substitutes' decisions. Under section 21(1) wishes made while patients were capable that are applicable to their current circumstances must be followed. If there are no applicable wishes, substitutes must make the decision that is in the patients' best interests, as defined in section 21(2). In none of the analyzed cases did a patient's previously expressed wish play a determinative role in the Board's reasoning (likely because where wishes are clear there is no need to apply to the Board, and where the wishes are vague the Board is wary of following them). Sibbald & Chidwick found that four Board cases considered previous wishes, but in all four decisions the Board also considered the patient's best interests. (20)

   Since previous wishes are rarely determinative in this type of case (21), end-of-life decisions are made on the basis of the patient's best interests. If the substitute's decision is not in the patient's best interests, the substitute is instructed to change his or her decision or the substitute is replaced. The Act defines best interests in section 21(2). Section 21(2)(a) and (b) focus on the patient's beliefs and values as well as their previous wishes...