Best interests at end of life: an updated review of decisions made by the Consent and Capacity Board of Ontario

Abstract

Purpose

To increase our understanding of the notion of “best interests” in end of life disagreements through an updated review of decisions made by the Consent and Capacity Board of Ontario. There was a significant increase (235%) in decisions from this tribunal between 2009 and 2011. “Best interests” test is used when no prior expressed wishes are known to the surrogate decision-makers.

Methods

Purposively sampled written decisions of the Consent and Capacity Board of Ontario between 2003 and 2011 that focused on the “best interests” of patients at the end of life. Interpretive content analysis was performed independently by 3 reviewers, and themes were identified by consensus.

Results

We found substitute decision makers (SDMs) rely on an appeal to their own values or religion in their interpretation of best interests; physicians rely on clinical conditions; board emphasizes alignment with Health Care Consent Act. In the more recent cases, we found that SDMs report that patients value suffering; that SDMs have unrealistic hope for recovery and can communicate and get direction from the incapable patient; that SDMs need education on their role and responsibility as SDM; and that SDMs need time to provide consent, and that most proposed treatment plans that were sources of conflict included “palliative care.”

Interpretation

Several lessons are drawn for the benefit of health care teams engaged in disagreements at end of life with SDMs over the best interests of patients.

Introduction

Disagreement between proxy or substitute decision-makers (SDMs) and physicians about how to care for patients at the end of life continue to result in court cases across Canada [1], [2], [3], [4] and internationally [5], [6]. Where patients are unable to participate in decision making either directly or through advance care plans, a common approach to resolving these disagreements is to appeal to a patient's “best interests” [7], [8], [9], [10]. Generally, best interests take into account both patient's considerations (ie, values and beliefs), and medical considerations (ie, which treatments are indicated and how likely they are to provide benefit, etc). Despite a common framework from which to address the patient's clinical condition and values, disagreement on what constitutes best interests for individual patients persist.

In Ontario, best interests are determined via the consent process as outlined in the Health Care Consent Act (HCCA) (See Box 1). The physician first considers what treatment(s) are indicated according to the standard of care, determines if there are any relevant prior expressed wishes or values of the patient, and then proposes a plan of treatment to the SDM to seek consent or refusal. It is then the role of the SDM to consent or refuse the proposed treatments [7]. This is different from, for example, in the UK, where physicians determine best interests and do not require a family's consent to act on this determination [8]. Ontario is also unique in that where a physician believes that an SDMs refusal to consent to a treatment plan is not in the best interests of the patient, then that physician can involve a neutral third party called the Consent and Capacity Board (CCB). The CCB can then decide whether the SDM properly followed the legislation, effectively determining what constitutes the legally interpreted best interests of the patient. The decisions of the CCB have proven valuable in developing the notion of best interests in practice, in particular, where disagreement is most troubling at end of life [11].

Past research on best interests as interpreted by physicians, family members, and the CCB show that SDMs often conflate a patients values with explicit wishes, that religious values and positions have no bearing on a patients best interests unless they can be specifically demonstrated to have been held by the patient, that SDMs are more likely to focus on their own values rather than the patient values, and that a patient's “condition” required assessment of more than life itself [12]. Since 2009, there has been a dramatic increase in the use of the CCB to resolve end of life disagreement (2 per year between 2003 and 2008 to 5 per year between 2009 and 2012). In addition, this increase has been accompanied by international attention on the CCB's effectiveness on resolving disagreement [13]. As such, we felt it was appropriate to review these new decisions in order to determine if there is anything new to learn regarding how best interests are interpreted by physicians, SDMs, and the law.