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

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1 Journal of Critical Care (2013) 28, Best interests at end of life: an updated review of decisions made by the Consent and Capacity Board of Ontario Paula Chidwick PhD, Robert Sibbald MSc, Laura Hawryluck MD, FRCPC 1 William Osler Health System, London Health Sciences Centre, Schulich School of Medicine and Dentistry, Western University, University Health Network, University of Toronto Keywords: End of life; Best interests; Consent and capacity; Decision-making; Legal decisions 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 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 Elsevier Inc. All rights reserved. 1. Introduction Disagreement between proxy or substitute decisionmakers (SDMs) and physicians about how to care for None of the authors have any actual or perceived conflicts of interest to disclose. Corresponding author. Tel.: x address: Paula.chidwick@williamoslerhs.ca (P. Chidwick). 1 Dr Hawryluck has been involved in 2 of the CCB cases reviewed and has written an affidavit to the Supreme Court that discusses how a pending critical care case raises issues of national importance to all Canadians. patients at the end of life continue to result in court cases across Canada [1-4] 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 [7-10]. 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 /$ see front matter 2013 Elsevier Inc. All rights reserved.

2 Best interest at end of life 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 Box 1 Sec. 21(2) of the HCCA (1996). In deciding what the incapable person's best interest are, the person who gives and refuses consent on his or her behalf shall take into consideration. (a) the values and beliefs that the person knows the incapable person held when capable and believes he or she would still act on if capable. (b) any wishes expressed by the incapable person with respect to the treatment that are not required to be followed under paragraph 1 of subsection (1); and. (c) the following factors:. 1. Whether the treatment is likely to. i. improve the incapable person's condition or wellbeing. ii. prevent the incapable person's condition or wellbeing from deteriorating, or. iii. reduce the extent to which, or the rate at which, the incapable person's condition or well being is likely to deteriorate. 2. Whether the incapable person's condition or wellbeing is likely to improve, remain the same or deteriorate without treatment. 3. Whether the benefit the incapable person is expected to obtain from the treatment outweighs the risk of harm to him or her. 4. Whether a less restrictive or less intrusive treatment would be as beneficial as the treatment that is proposed. 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. 2. Methodology We searched a public online, nonprofit database managed by the Federation of Law Societies of Canada [14] to search for relevant CCB decisions available from In total 1367 cases were collected. Out of these, purposive sampling was used to identify those concerned with the best interests of patients regarding treatment issues at the end of life. In total, we identified 26 decisions. An analysis of the first 12 of these cases was reported in 2009 [12]. The 14 new cases were similarly independently read and analyzed by three researchers (R.S., P.C., and LH), and then consensus was reached on themes and codes. First, cases were read to identify statements that related to a concept or idea, and then we divided the cases into 5 sections: medical status, treatment plan, SDM interpretation of best interests, applicants' interpretation of best interests, and CCB interpretation of best interests. We then identified specific themes within each section. The authors have been involved in CCB cases by assisting health care teams access and were previously familiar with the nature of arguments prepared for such hearings. In total, 28(100%) decisions constitute a purposive, illustrative sample of end of life disputes to examine how best interests are framed by SDMs, physicians, and the CCB. Interpretive content analysis was used to describe (compare and contrast) and make inferences about the characteristics of the cases to better understand the role of best interests. 3. Results A summary of all CCB cases concerning end of life is listed in Table 1. Of these cases, proposed treatment plans commonly suggested withdrawal of life sustaining treatments, the majority of decisions favored the opinions of the physician, and more than a quarter of all cases were appealed. The frequency of end of life cases brought to the CCB increased in Of note, 38% (n = 5) of cases between 2009 and 2012 were dismissed (finding the SDMs 23

3 24 P. Chidwick et al. interpretation of best interests could not be overturned), compared with 0% of the cases between 1996 and Also, since 2009 fewer cases are appealed to the Superior Court, there is a decrease in the prevalence of advance directives; and most treatment plans were proposed alongside palliative care (Table 2). Most cases concerned patients that had several common characteristics including, advanced dementia, Alzheimer's, disorders of consciousness (eg, PVS, irreversible coma), bed sores, inability to swallow, irreversibility of conditions, and cascading health. Also common among cases, SDMs were found to rely on their own values or religion in their interpretation of patients best interests whereas physicians focus more narrowly on clinical conditions and whether treatments can still be of benefit. This updated review offers 3 new themes regarding interpretation of best interests (Table 3) Theme: SDMs report patients value suffering as price for life SDMs described patients values as wanting to suffer [Re (DW)] believing that the patient would accept the pain as the price of living. [Re (HJ)] For example, one SDM claimed that her loved one would prefer to be uncomfortable, even in the face of the dementia and his dependence, that he would choose discomfort over a decision to stop taking all possible steps to maintain his life. [Re (DW)] Another SDM believed that her mother would want to Table 1 Consent and Capacity Board cases addressing best interests at end of life Case Year Name Hospital Treatment (Plan) Board Decision Appeal Proposed Re (GS) Ottawa DNR Ordered consent Re (MN) Trillium Withdrawal Appointed decision Re (AK) York Central Withdrawal Ordered consent Re (SR) Trillium Palliative Ordered consent Re (MD) St. Joes, TO DNR Dismissed Upheld CCB decision Re (DW) Halton Health Withdrawal Dismissed Re (BS) William Osler Palliative Ordered consent Re (SS) Grand River Withdrawal Dismissed Re (JM) LHSC Withdrawal Ordered consent Upheld CCB decision (appealed) Re (LF) Belmont House Maintain G-tube Dismissed Re (DP) Humber River Withdrawal Dismissed (2nd application) Re (DP) Humber River Withdrawal Dismissed Re (W) London Health Sciences Dialysis Ordered consent Re (N) Grand River Withdrawal Ordered consent Re (G) London Health Sciences Withdrawal Ordered consent Upheld CCB decision Re (E) University Health Network Withdrawal Ordered consent Upheld CCB decision Re (C) London Health Sciences Tracheostomy Ordered consent Re (B) St Josephs Health Care Withdrawal Ordered consent Upheld CCB decision Re (MB) Rouge Valley Withdrawal Appointed decision Re (L) London Health Sciences Surgical Graft Ordered consent Re (KMS) St. Catherines Withdrawal Ordered consent Re (GA) North York DNR/no vent Ordered consent Re (EJG) Hamilton Withdrawal Ordered consent Upheld CCB decision Re (CD) North York Withdrawal Ordered consent Re (EB) Scarborough Feeding Tube Appointed decision Re (P) Niagara DNR Ordered consent Re (IA) London Health Sciences Withdrawal Appointed decision Re (HJ) University Health Network Withdrawal Ordered consent Overturned CCB decision Form C hearings to determine appropriate decision maker.

4 Best interest at end of life Table 2 CCB Statistics for End of Life Cases Total Pediatric cases 20% (2) 17% (3) 18% (5) Geriatric cases 80% (8) 83% (15) 82% (23) Cases appealed to 20% (2) 22% (4) 21% (6) Superior Court Cases appealed to 10% (1) 6% (1) 7% (2) Court of Appeals Cases heard by Court 0% (0) 0% (0) 0% (0) of Appeals Cases overturned 10% (1) 0% (0) 4% (1) by courts CCB ruled in favor of 100% (10) 67% (12) 79% (22) Clinicians perspective CCB ruled in favor of 0% (0) 33% (6) 21% (6) SDM perspective Patients had advanced 20% (2) 6% (1) 11% (3) care directive Patients had applicable 0% (0) 0% (0) 0% (0) advanced care directive Total cases endure the pain, to suffer whatever the consequences may be, to maintain and sustain her life. [Re (SS)] 3.2. Theme: Unrealistic hope for recovery and communication with patient SDMs in the majority of cases maintained a persistent belief that the medical experts were wrong in their diagnoses and prognoses. This perception took many forms, often in an expression that attributes of the patient were not being considered (eg, was a fighter ), [Re (HJ)] or that only time was needed for the patient to beat the odds. Interestingly, in several cases, this disbelief took the form of outright countering physician assessments of a patient's inability to communicate due to disorders of consciousness. SDMs further suggested that this communication was meaningful in considering best interests and in some cases, claimed the patient was specifically making a request to be kept alive. One SDM reported seeing her mother shed a tear, move her head, squeeze a finger, and other such responses when spoken to, albeit very infrequently. [Re (DW)] Another reported that when she talks to him that he knows her voice [Re (JM)] and he would open his eyes and make eye contact. He would try to move his mouth to speak. [Re (BS)] In one case, an SDM claimed that she knew her husband so well she could read his thoughts. [Re (N)] 3.3. Theme: Physician error in meeting ethical and legal obligations For the first time, physicians lost cases brought to the CCB. In some of these cases, physicians were found to have made errors in meeting their ethical and legal obligations to patients. These errors did not include their submissions regarding the interpretation of section 21 of the HCCA in relation to their patient care per se, rather, in such cases, SDMs were found not to be properly informed of the rules of consent and decisionmaking and process of the CCB prior to the hearing; SDMs were not given enough time to consent; the physician did not document the finding of patient incapacity, nor ask or document explicitly about prior expressed wishes, advance directive, beliefs or values of the patient Notable findings regarding the Board's adjudication of best interest arguments In reviewing the cases, we noted some interesting findings that are worth comment, despite the fact that they were not found to constitute a theme among several cases. First, the CCB found as a matter of fact in one case where they had ordered the SDM to consent to a proposed treatment plan, that where the 2 SDMs would not consent, no other family member would. The intent of the endorsement was to allow the physician to proceed directly to the Public Guardian & Trustee rather than proceed through the list of possible family members who might consent as directed by the CCB. 25 Table 3 Themes Identified in CCB Decisions Medical status SDM interpretation of BI Applicants interpretation of BI Boards reasons Incapable Relevance of God/religion Focus on clinical evidence Distinction between values and wishes Compromised Emphasized own values Inability to benefit/likelihood Condition more than life itself consciousness over those of the patient to cause harm Symptoms of dementia *Patient values' suffering' Other treatments available Religious values considered only if demonstrated to have been held by patient Cascading health problems *Unrealistic hope for recovery SDM focused on patient values and not clinical prognosis as required by HCCA Irreversibility of condition *Physician errors Inability to swallow Recurrent infections Chronic bed sores *newly identified themes in cases

5 26 P. Chidwick et al. The other interesting finding was that in 2 of the latest cases the board seemed to indicate that a patients religious values were paramount in determining best interests. Despite acknowledgement that other considerations [namely, in section 21(2)(c)] must be considered, it didn't appear as if they had been. In the one case the board seemed to argue that in end of life cases, section 21(2)(c) could not inform best interests since the question of whether death improves or worsens a patient's condition is philosophical. [Re (SS)] 3.5. Interpretation We found that end of life cases brought to the CCB concern patients that have similar medical conditions, that their SDMs frequently relied on their own values and religious beliefs in their interpretations of best interests, and that physicians focused primarily on the clinical condition of the patient, and board reasons emphasized crucial distinctions such as that patients condition must include more than life itself. In the more recent decisions ( ), the SDMs described patients as valuing suffering and believed they could communicate with patients despite disorders of consciousness. Where physicians lost cases, he/ she was found to have made several fundamental errors. Increased familiarity of the process, recent literature, media coverage and increased use of ethicists in the CCB process [15] may have led to an increase in the use of the CCB in resolving disagreement. However, despite the increased applications to the CCB, it is clear that knowledge about legal and ethical obligations, or even how to best bring a case to the CCB, is still lacking. Ratnapalan [15] described a failure to appropriately document interactions with SDMs in an Ontario based intensive care unit. This study also reveals that physicians need to improve documentation of these aspects of care to both improve its clarity and quality. Despite the increased rate of cases, more than 1 in 4 were appealed to Superior Court confirming physicians perceptions that the process never ends [15]. Living wills and advance directives were only found to be helpful in one case we reviewed. Advance directives were found in 3 cases but in each case were not considered specific enough or applicable to patients current condition. This is surprising given the widespread attention on advanced care planning [16] but it is also significant that in order for the advance directive to be effective it must be applicable. Healthcare professionals commonly refer to their ethical obligation to do no harm. However, recognizing an increasingly diverse set of patient values, intractable conflict may be inevitable where patients genuinely hold values that would indicate continued treatment where physicians feel they would only be doing harm without any prospect of benefit. More directly, the challenge is that some may perceive benefit in suffering. This emphasizes the importance of asking about patient's values and beliefs when a team first meets the patient especially given the frequent application of SDM values to decision-making. This issue also raises some important questions regarding the purpose of the CCB itself. Where physicians feel they can only do harm with a given treatment, such treatments are not normally offered. If the only plausible treatment plan becomes one of palliation/ withdrawal and yet this is framed as best interests where the CCB rules in favor of SDMs, the CCB may be inadvertently creating a unreasonable standard of care for physicians. SDMs reported that patients were able to communicate with them often attributed to movements that healthcare professions regard as reflexive or myoclonic. Uncertainty regarding patient consciousness has recently been highlighted by fmri studies that indicate some patients with disorders of consciousness, may communicate given the right technology [17]. However, the nature of such consciousness is far from understood, and does not indicate capacity regarding decision-making whereas their clinical outcome is often quite certain no matter how aggressive the medical treatment plans. The results showed treatment plans often explicitly included palliative care in addition to withholding and/or withdrawal of life sustaining treatments. However, the World Health Organization (and Health Canada) definition of palliative care describes that the focus of care is on achieving comfort and ensuring respect for person[s] nearing death and includes managing pain and other symptoms, providing social, psychological, cultural, emotional, spiritual and practical support supporting caregivers, providing support for bereavement. All intensive care unit patients are receiving palliative care from admission, concurrently with other plans of treatment and it is unnecessary to propose palliative care at this particular time because as defined it is already in place. A 2011 Court of Appeals decision seemed to misapprehend this suggesting that treatment is linear and that when you withdrawal of life support this would then be followed by the provision of appropriate palliative care, which required consent [18]. This judgment is currently being appealed to the Supreme Court of Canada. 4. Recommendations Simple errors that lead to adverse outcomes should be addressed through quality improvement (eg, use of checklists) and education [19,20]. For example, SDMs need to be informed of their roles and responsibilities and CCB process as soon as they become involved and this should be documented. Second, SDMs need time to consider the information provided and be provided an opportunity to ask questions and consider alternatives. Third, capacity must be properly documented in the patient record. Where the physicians lost their applications to the CCB, these basic obligations were not met. There are limitations to our study. Our data set was entirely based on the Boards interpretation of events. It is

6 Best interest at end of life unclear if best interests should be viewed differently for pediatric patients which make up 20% of the cases reviewed in this study. CCB decisions have broadened our notion of best interests to discuss suffering as a value, and have also demonstrated the challenge of differing perceptions of patient awareness. Our analysis demonstrates that physicians need to understand their basic legal/ethical obligations in order to avoid basic errors and make proper use of the CCB. Information about patient wishes, values and beliefs needs to be systematically captured and documented when a patient is admitted. Values histories tools, story boards may prove more useful to SDMs and decision makers than advanced directives. Finally, the 2 problems of differing perceptions of awareness, and patients who value suffering raise important questions about the nature and purpose of medical treatment. Physicians who feel obligated to only provide treatments where there is some perceived benefit may be directed to violate their own professional values and ethical codes if a patient's values are seen to outweigh the clinical prognosis. On the other hand, if the physicians feel treatment is not indicated, they may choose not to propose it at all. This tension warrants further attention. References [1] Rasouli v. Sunnybrook Health Sciences Centre, 2011 ONSC 1500 (CanLII) [2] Golubchuk v. Salvation Army Grace General Hospital et al., 2008 MBQB 50 (CanLII) [3] Rotaru v. Vancouver General Hospital Intensive Care Unit, 2008 BCSC 318 (CanLII) [4] Sweiss v. Alberta Health Services, 2009 ABQB 691 (CanLII) [5] Bentacourt vs. Trinitas Hospital, 415 N.J.Super [6] (accessed Nov. 2011). [7] Health Care Consent Act of Ontario, 1996, SO 1996, c 2, Sch A. [8] Mental Capacity Act, UK, 2005, c 9. [9] The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to Forego Life-sustaining treatment. Washington, DC: U.S. Government Printing Office; [10] Baumrucker SJ, Sheldon JE, Stolick M, Morris GM, Vandekieft G, Harrington D. The ethical concept of "best interest". Am J Hosp Palliat Care 2008;25(1): [11] Chidwick P, Sibbald R. Physician perspectives on legal processes for resolving end-of-life disputes. Healthc Q 2011;14(2): [12] Sibbald RW, Chidwick P. Best interests at end of life: a review of decisions made by the Consent and Capacity Board of Ontario. J Crit Care 2010;25(1):171.e1-7 [Epub 2009 Sep 24. Review]. [13] Pope T. Surrogate selection: an increasingly viable, but limited, solution to intractable futility disputes. St Louis Univ J Health Law Policy 2010;3:183. [14] (access Jan 09, 2012). [15] Ratnapalan M, Cooper AB, Scales DC, Pinto R. Documentation of best interest by intensivists: a retrospective study in an Ontario critical care unit. BMC Med Ethics 2010;11:1. [16] Canadian Hospice Palliative Care Association. Advance Care Planning in Canada: National Framework for Consultation Executive; November [17] Monti MM, Vanhaudenhuyse A, Coleman MR, Boly M, Pickard JD, Tshibanda L, et al. Willful modulation of brain activity in disorders of consciousness. N Engl J Med 2010;362(7): [Epub 2010 Feb 3]. [18] Rasouli v. Sunnybrook Health Sciences Centre, 2011 ONCA 482 (CanLII) [19] Sibbald RW, Chidwick P, Handelman M, Cooper AB. Checklist to meet ethical and legal obligations to critically ill patients at the end of life. Healthc Q 2011;14(4):60-6. [20] Span P. Plain Speaking at the End of Life. N Y Times 2011http:// newoldage.blogs.nytimes.com/2011/12/14/plain-speaking-at-the-endof-life/ accessed Jan 09,2012). 27