Priority setting and cardiac surgery: A qualitative case study

Health Policy 80 (2007) 444–458

Priority setting and cardiac surgery: A qualitative case study Nancy A. Walton a,b,∗ , Douglas K. Martin c,d,1 , Elizabeth H. Peter e,f,g,2 , Dorothy M. Pringle e,3 , Peter A. Singer d,4 a

Faculty of Community Services and The School of Nursing, Ryerson University, 350 Victoria Street, Toronto, Ont., Canada M5B 2K3 b Joint Centre for Bioethics, University of Toronto, 88 College Street, Toronto, Ont., Canada M5G 1L4 c Department of Health Policy, Management and Evaluation, 88 College Street, Toronto, Ont., Canada M5G 1L4 d Joint Centre for Bioethics, University of Toronto, 88 College Street, Toronto, Ont., Canada M5G 1L4 e Faculty of Nursing, University of Toronto, 50 St. George Street, Toronto, Ont., Canada M5S 3H4 f Joint Centre for Bioethics, University of Toronto, 88 College Street, Toronto, Ont., Canada M5G 1L4 g Nursing Effectiveness Utilization and Outcomes Research Unit, University of Toronto, 50 St. George Street, Toronto, Ont., Canada M5S 3H4

Abstract Purpose: The purpose of this study is to describe priority setting in cardiac surgery and evaluate it using an ethical framework, “accountability for reasonableness”. Introduction: Cardiac surgery is an expensive part of hospital budgets. Priority setting decisions are made daily regarding ever increasing volumes of patients. While much attention has been paid to the management of cardiac surgery waiting lists, little empirical research exists into the way actual decision makers deliberate upon and resolve priority setting decisions on a daily basis. A key goal of priority setting, in cardiac surgical areas as well as others, is fairness. “Accountability for reasonableness” is a leading ethical framework for fair priority setting, and can be used to identify opportunities for improvement (i.e. make it fairer) and highlight good practices. Methods: A case study was conducted to examine the process of priority setting processes at three University of Toronto affiliated cardiac surgery centres. Relevant documents were examined, weekly triage rounds were observed for 27 months, and interviews were carried out with 23 key participants including cardiac surgeons, cardiologists, and triage nurses. In data analysis, the conditions of “accountability for reasonableness” (relevance, publicity, appeals and enforcement) were used as an analytic lens. Results: Relevance: While decisions may appear to be based strictly upon clinical criteria (e.g. coronary anatomy); non-clinical criteria also have an impact upon decision-making (e.g. patients’ lifestyle choices, type of surgical practice and departmental constraints on resource use). Participants stated that these factors influence their decision-making and can result in unfair and inconsistent decisions. Publicity: Non-clinical reasons are not publicly accessible, nor are they clearly acknowledged in discussions between cardiac clinicians. Appeals: There are mechanisms for challenging decisions however without access to

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Corresponding author. Tel.: +1 416 979 5000x6300; fax: +1 416 979 5332. E-mail addresses: [email protected] (N.A. Walton), [email protected] (D.K. Martin), [email protected] (E.H. Peter), [email protected] (D.M. Pringle), [email protected] (P.A. Singer). 1 Tel.: +1 416 978 6926; fax: +1 416 978 1911. 2 Tel.: +1 416 946 3437; fax: +1 416 978 8222. 3 Tel.: +1 416 946 2068; fax: +1 416 978 8222. 4 Tel.: +1 416 978 4756; fax: +1 416 978 1911. 0168-8510/$ – see front matter © 2006 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.healthpol.2006.05.004

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the non-clinical reasons, this can be problematic. Enforcement: Participants cite little departmental or institutional support to engage in fairer priority setting. Conclusions: To our knowledge, this is the first study to describe actual priority setting practices for cardiac surgery practices and evaluate them using an ethical framework, in this case, “accountability for reasonableness”. Priority setting decision making in cardiac surgery has been described and evaluated with lessons learned include specific findings regarding the contextual and dynamic nature of decision making in cardiac surgery. The approach of combining a descriptive case study with the ethical framework of “accountability for reasonableness” is a useful tool for identifying good practices and highlighting areas for improvement. The good practices (including surgeons strongly facilitating patients seeking second opinions and approaching patients from a holistic perspective in consideration for surgery) and areas for improvement (including lack of transparency and lack of institutional support for “fair” decision making) that we have identified in this case study can be used to reflect upon the present tool used in priority setting and improve the fairness and legitimacy of priority setting decision making in cardiac surgery. © 2006 Elsevier Ireland Ltd. All rights reserved. Keywords: Priority setting; Cardiac surgery; Ethical framework; Micro-level decision making; Meso-level allocation

1. Introduction Cardiovascular surgery is an expensive part of hospital budgets [1]. Cardiac surgery is a fast paced and quickly growing specialization, incorporating some of the most expensive technologies of any surgical specialty. The capacity of cardiac surgery is also growing as more elderly and high risk patients are being accepted for surgery. While offering more patients significant options in revascularization is a positive step, the priority setting process has become more complex and complicated for decision makers as the average acuity of the cardiac patient increases and the available options for surgical intervention increase in number. Currently, our understanding of how priority setting decisions are made in cardiac surgery is at a basic level. There are few clinicians focusing on priority setting specifically and even fewer focusing on priority setting within cardiac surgery. Most of the Canadian literature addresses specific issues in priority setting such as waiting list management and monitoring as well as patients’ outcomes [2–7]. However, these studies focus on practical aspects of the process on an everyday basis and give little attention to any ethical issues within priority setting. While it is important to examine the outcomes and practical aspects of priority setting decisions, it is also important to examine the actual process of decision-making and the experience of those most involved in the process from an ethical lens. Giacomini et al. examined guidelines for cardiac surgical decision making from 1989 [8]. They found that 69% of the guidelines mentioned psychosocial

criteria as procedure indications or contraindications. Researchers in the United Kingdom demonstrated that evaluations of surgical candidates include issues of lifestyle habits and the deservedness of the patient alongside discussions of medical criteria. This study concluded that there were many non-specific terms such as attitude, substance abuse, compliance, psychosocial stability and the general medical, emotional and mental state used in the criteria for eligibility for cardiac surgery [9,10]. Criteria such as lifestyle choices, occupations, smoking and alcohol intake, moral character, obesity and the patient’s perceived will to make lifestyle changes were discussed both overtly and subtly in the case conferences. These criteria were used in the decision making process to “rule out” or less often, to “rule in” patients for cardiac surgery [9,10]. Eisenberg, in his work on medical decision-making, theorized that clinical decision-making occurs in the context of sociologic influences such as a patient’s age, gender, race and social class as well as physician specific influences such as the practice setting, the degree of specialization of practice and the physician’s background [11]. Clark et al., revisiting Eisenberg’s work, state that there are few research studies that incorporate the important and inevitable social context of clinical decision-making [12]. Additionally, the decisionmaking models created out of this research are limited in scope and described as “models of biomedical rationality” [12]. Many research investigations of clinical decision making assume that physicians make clinical decisions in ‘socially insular clinical settings’ and fail to acknowledge the sociological research on the

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patient–physician relationship and the highly contextual nature of modern medical practice [12]. Factors other than biomedical criteria about patients are used in surgeons’ decision making when priority setting [3–6,8–10]. It is stated that both the patients and the processes are complex, occur within specific contexts and involve much more than simply an assessment of the biomedical facts about an individual patient. These studies do not take these observations further by talking to surgeons and other decision makers about their actual decision making practices. There is no thorough descriptive account of the process by which cardiac surgeons make priority setting decisions on a daily basis in their practice nor are there studies discussing the fairness of the process. The actual and perceived fairness of a priority setting process is an important concern for all, patients and families, the general public, surgeons, nurses, other health care professionals and policy makers. Although this study focuses on cardiac surgery priority setting decisions, the descriptions and subsequent lessons learned are applicable to other contexts at the micro level. Clinicians make priority setting decisions on a daily basis in many different contexts, from emergency rooms to operating rooms to walk in clinics. Additionally, clinicians in all contexts and areas at the micro level aim to make fair and legitimate decisions. The challenges, constraints and factors that have an impact upon the clinicians’ abilities to make fair and legitimate decisions described by the participants in this study are not unique to cardiac surgery departments and can be appreciated by those working in other areas of health care in Canada at a micro level. The purpose of this study is to describe how priority setting decisions are made within several programs of cardiac surgery, and to evaluate this decision-making process in regards to its fairness and legitimacy using an ethical framework, ‘accountability for reasonableness’ (A4R) [13]. By evaluating the process using an ethical framework developed through actual priority setting experiences and grounded in theories of democratic deliberation, we can make comments about the fairness of the process. It is only after we describe the process using the perspectives of those most involved and evaluate it using a relevant framework, that we can make recommendations regarding areas for improvement or comment on best practices.

1.1. The ethical framework: accountability for reasonableness Why is there a need for an ethical framework for priority setting processes? There are two key reasons. First, there is a need for an ethical framework that emphasizes process because we can never have agreement on what decisions to make [14]. Additionally, as a pluralistic society, we will never reach agreement on what outcomes are correct or preferable in priority setting dilemmas [14,15]. Most traditional methods of approaching priority setting problems in health care are limited in their focus and scope as well as their applicability in the real world. Philosophical approaches to distributive justice such as utilitarianism or egalitarianism are highly abstract and are based on different values and lead to different decision outcomes, none of which is clearly correct. Economical approaches such as the cost-effectiveness analysis or the use of quality- or disability-adjusted life years (QALYs and DALYs) are limited as they do not address contextual, individualistic and humanistic aspects of actual patients and priority setting decision making [14,16,17]. Other approaches, such as legal and organizational ethics approaches are also limited in their scope, their ability to address contexts of decisionmaking and the possibility of application [14]. While they offer specific strategies for application, they do not address how to set priorities in a practical way [14]. Holm describes the last two decades of approaches to priority setting in health care systems as occurring in two phases [18]. The first phase included articulating specific criteria, factors or principles for priority setting. Two examples of this kind of approach are the Oregon experiment and the New Zealand Priority Criteria Project [19,20]. These approaches were limited in their application and their ability to provide answers in cases of dispute or conflicting values [21]. The most recent approaches to priority setting problems, as cited by Holm, has grown out of two realizations [18]. First, there was a realization that more than simply rules or outcomes needed to be articulated. The process by which priority setting occurred also required examination, and this realization has driven the use of this ethical framework as well as the development of institutions like the National Institute of Clinical Excellence (NICE) in the United Kingdom, with its focus on establishing clear processes in priority setting [21].

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The second realization was that we may never reach agreement on the specific criteria, factors or principles that are important in priority setting decisions. These criteria, factors and principles are based on values and aiming for agreement or consensus on moral issues or issues involving values in a diverse society is unreasonable and impossible [13,16,21,22]. Daniels states that, “In pluralist societies, we are likely to find reasonable disagreement about principles that should govern priority setting” (p. 1300) [21]. So, instead of focusing on trying to reach agreement on what decisions should be made, the focus should shift to opening up discussion on how priority setting decisions are made [14]. Instead of consensus, Daniels states, we must focus on a fair process [21]. A fair process, according to Daniels and Sabin involves important elements of transparency regarding reasons behind decisions, the use of reasons or rationales for decision making that are deemed relevant by all to meeting health care needs, and procedures of revising decisions in light of new evidence or challenges [13,23]. These key elements are drawn out of theories of justice and democratic deliberation, specifically in the work of John Rawls [13,24,25]. They ensure ‘accountability for reasonableness’ [13]. Fair procedures must also be sustainable and acknowledge the contexts and varied goals of all involved in the kinds of institutions where priority setting decisions are made [13]. Daniels and Sabin developed an ethical framework for examining priority setting processes according to their fairness and legitimacy. A key goal of priority setting, in cardiac surgical areas as well as others, is fairness, which remains an illusive concept for which consensus is difficult. Accountability for reasonableness is a leading ethical framework for fair priority setting, and can be used to identify opportunities for improvement (i.e. make it fairer) and highlight best practices. It encompasses values of democratic deliberation, which outlines elements of a fair process. The focus on the process instead of solely the outcomes is a more comprehensive way to approach exploration into priority setting problems. It can also help to illuminate the criteria used in decision making, from a different perspective than one concerned solely with outcomes. To date, this ethical framework stands alone as one focused on the processes of decision-making and grounded in theories of justice and democratic deliberation.

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Table 1 The four conditions of accountability for reasonableness [13] (1) Relevance condition. Rationales for priority setting decisions must rest on reasons and principles that fair-minded persons agree are relevant in meeting the diverse needs of the population, in the context of reasonable resource constraints. Fair-minded persons seek mutually justifiable grounds for cooperation (2) Publicity condition. Limit setting decisions and their rationales must be publicly accessible (3) Appeals condition. There is a mechanism for challenging and disputing decisions of limit setting, as well as the opportunity to revisit decision in light of further evidence (4) Enforcement condition. There is voluntary or public regulation to ensure that the first three conditions are met

Although priority setting decisions may be framed as medical or clinical decisions, they rest on value judgments. Reasonable people may certainly disagree on the factors and values involved in these decisions. They may disagree on the fairness of the decision and the legitimacy of the decision makers. There may never have agreement on what values or factors are relevant or about principles of fairness or legitimacy. Instead we must rely on a fair process. According to Daniels and Sabin, a decision making process is deemed to be fair according to the degree to which it meeting four conditions: relevance, publicity, appeals and enforcement. These four conditions of accountability for reasonableness are outlined in Table 1. There are two goals achieved in meeting these conditions. First, the decision making process is made essentially broader, by making public deliberation and examination part of the process. In other words, there is more involvement of the key stakeholders, the public, in decisions around the use of limited resources in their health care system. Second, achieving these conditions contributes to of social learning, making the public more knowledgeable about the health care system, limits and ways of reasoning about those limits [24].

2. Methods 2.1. Design This research involved a qualitative case study. Case studies are valuable where “broad complex questions

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have to be addressed in complex circumstances” [26] and are ideal when the goal is to study complex social phenomena in their natural settings and contexts [27]. Schramm, when defining the case study, states that “the essence of a case study, the central tendency among all types of case study, is that it tries to illuminate a decisions or set of decisions, why they were taken how they were implemented, and with what result” [28]. This method was appropriate for this research as priority setting in cardiac surgery is complex, social and context-dependent. In this research, the case is defined as the process of priority setting in cardiac surgery. We use an embedded design as we have attended to more than one unit of analysis, including multiple centres and multiple sources of data [28]. 2.2. Setting We examined cardiac surgery priority setting processes in three, large, urban university-affiliated hospitals, each with a large cardiac surgery department that handles patient population with a varied acuity, elective, urgent and emergent patients. The differences between these programs are in volume of surgical cases, ratio of patient acuity, and number and type of referrals from other centres. Some of these differences are directly due to availability of resources as the size of the program and number of surgeons directly impacts the number and acuity of cases being done. The largest program utilizes 10 surgeons at the time of this study with an approximate annual caseload of approximately 2200 patients. The second largest program has 5 surgeons and approximately 1200 cases are performed annually. The third centre had 5 surgeons at the time of this study and an annual caseload of approximately 1100 patients [29]. 2.3. Sampling We used three sampling techniques. First, we attempted to identify all key participants (e.g. surgeons, triage nurses) involved in each case’s priority setting processes and all publicly available documents relating to priority setting in cardiac surgery in Ontario (e.g. patient information sheets and educational material, Cardiac Care Network public documents) (sometimes referred to as universal sampling). This initial group consisted of 15 cardiac surgeons and four triage nurses.

Second, we included individuals and documents that were identified as representing an important role or viewpoint in the priority setting activities of each case (sometimes referred to as theoretical sampling). Third, the principal investigator (NW) attended of ‘triage’ meetings at which priority setting decisions were made (sometimes referred to as convenience sampling). Data sources were sampled until theoretical saturation was achieved—that is, until no new concepts emerged from new data sources. 2.4. Data collection Data were collected from three sources: by gathering relevant documents, interviewing key participants and observing group priority setting processes. The first method of data collection was gathering of relevant documents (e.g. reports from the provincial regulatory body on cardiac surgery outcomes). In this study, documents published in the late 1980s and the early 1990s gave information on the historical context of priority setting in cardiac care [41,43,44]. Provincial documents provided a perspective on the overarching regulations, restrictions and guidelines from the provincial government that affects decision-making at each level. This gave insight, in particular, to the issues that have an impact upon decision makers at the clinical level [45–47]. The amount, quality and public accessibility to documents gave insight into the transparency of the process, an issue with which we were concerned. The second source of data was semi-structured interviews with key participants in the priority setting process. Interviews were audio taped and transcribed. An interview guide was used and modified as findings emerged. In total, we conducted 23 interviews – 15 surgeons, 4 triage nurses, 2 cardiologists, 1 secretary and 1 representative of the provincial regulatory body – between August 2000 and January 2003. The third source of data was field notes from direct observation of triage and case rounds—a total of 240 h. 2.5. Data analysis Although this was not grounded theory research, the methods of data analysis from grounded theory were the best fit for analysis of the data set from this innovative research design. Use of this analytic technique was appropriate for developing analytic categories or

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hypotheses about the complex social phenomenon of priority setting in cardiac surgery [18,31,32,34]. The four conditions of the ethical framework ‘accountability for reasonableness’ provided a guiding framework for data analysis. The interview transcripts and field notes provided the key texts for analysis; the documentary data was used to verify, support or highlight key issues that emerged. Analysis was done in three stages: open coding, axial coding and selective coding [36]. In open coding, we examined the data for discrete pieces which related to a single concept and each was labeled (coded) [36,37,39]. As the process evolved, pieces of data were recognized as being related to already identified concepts and were identified as so. A coding list of 67 discrete concepts developed (e.g. “access to care” and “delay”). In axial coding, these 67 codes were collapsed into 13 categories as connections between the concepts were identified—for example, the codes identified as “surgical skill”, “experienced versus the novice surgeon” and “predictive ability of the surgeon” were grouped into a category, which was labeled as “surgeon specific factors”. Finally, in selective coding, the data were organized into themes using the four conditions of ‘accountability for reasonableness’. We found that there were some categories which did not “fit” into any of the four conditions at first glance. Instead of discarding them or treating them as outlying data, we instead found that, as data analysis progressed, these categories were able to fit into larger categories quite easily. In this case, the innovative approach of describing and evaluating priority setting in cardiac surgery, using an ethical framework, allowed us to use the four conditions of ‘accountability for reasonableness’ [24]. However, the framework was much more than simply a method for evaluation. It served as a theoretical lens through which data were collected, viewed and analyzed. We took four steps to ensure validity in this research. First, we maintained a detailed documentation of our methods to allow critical scrutiny [33,35,38,42]. Second, we used triangulation of data—data gathered from a variety of sources by a variety of means and through analysis, develop “converging lines of inquiry” [28]. We integrated the data from three sources: interviews, observations and documents. For example, we took meticulous field notes when observing triage rounds, which exposed group discussions and provided con-

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text and direction for individual interviews [28,30,40], and the documents helped to provide key insight into the process of priority setting. Third, the data analysis was characterized by a high level of authenticity due to the primary investigator’s ‘insider’ clinical experience [39]. Fourth, analysis was supported by the continuous participation of members of a supervisory committee, consisting of a bioethicist, a physician bioethicist and two nurses. The interviewer and each of the committee members had experience with qualitative data analysis and contributed their expertise to the analytic process. Analytic decisions, and differences of viewpoint, were identified and resolved through discussion and consensus so that no single viewpoint dominated. 2.6. Research ethics This study was approved by the Human Subjects Research Committee at the University of Toronto. Each participant was asked to read and sign a consent form before being interviewed. The identity of participants was kept confidential at all stages of the research, including transcription, and all raw data were kept in a safe and inaccessible area, available only to the primary researchers.

3. Results In this section we present the results according to the four conditions of accountability for reasonableness; relevance, publicity, appeals/revision and enforcement. Supporting verbatim quotes from interviews with participants have been included to emphasize key points. 3.1. Relevance The priority setting decisions we studied were based on a complex set of interrelated clinical and nonclinical reasons. Participants emphasized that each case involved a different combination, or cluster, of these reasons, and different decision makers emphasized different reasons in unique ways. An overview of these reasons is found in Table 2. Most participants agreed that clinical reasons are the first consideration when making decisions regarding cardiac surgery patients. These reasons were articu-

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Table 2 Reasons used by cardiac surgeons in decision-making Clinical reasons

Non-clinical reasons

Patient related “medical reasons” 1. Coronary anatomy 2. Left ventricular function 3. Symptoms 4. Co-morbidities 5. Special urgent situations such as tight aortic stenosis or high left main coronary artery disease Surgeon specific reasons 6. Goals of cardiac surgery 7. URS (calculated maximum recommended waiting time to surgery; calculated risk of waiting for surgery)

Patient related non-medical reasons 1. Patients’ social situations 2. Lifestyle choices 3. Occupation 4. Mental state (high level of anxiety or indecision regarding surgery) Controversial patient related reasons

5. Advanced age 6. Obesity Surgeon specific reasons 7. Being on call or overly fatigued 8. Surgical skill and experience 9. Assessing risk and predictive abilities Context (contextual reasons) 10. Inter-institutional differences 11. Type of surgical practice 12. Waiting list management 13. Delay 14. Resource utilization (departmental constraints upon resource utilization and patterns of resource utilization) 15. Preferential access

lated by each participant, for example: “The symptom complex would be the first consideration, and then the anatomy.” Additionally, participants cited non-clinical reasons as having an influence on the decisions. The participants often found these reasons difficult to articulate, as they considered them specific to individuals. They used terms like “using intuitive knowledge”, “raising a flag” and “having a sure feeling about” when discussing these factors. They explored the following kinds of patient-focused non-clinical reasons: the patient’s social situation—e.g. ”Whether they have a family to support, and what their living environment is like, and what their job is, and the psychological problems and whether they’re demented or not.”; the patient’s psychological state—e.g. “I’m very, very reluctant to accept a patient, and almost never do, if that patient him or herself does not want an operation, no matter what the situation is.”; and controversial patient reasons, for example advanced age and obesity: “The problem with evidence is you take evidence about operations on eighty year olds [because] you have some article about it, saying [they] operated on a hundred

eighty year olds and one died . . . And there’s the evidence, but it’s not really good evidence.” Another group of important non-clinical reasons included surgeon specific reasons. These reasons, according to participants, varied widely between clinicians and were not well articulated, even among the clinicians who share these experiences. They included—being on call or overly fatigued: “If a patient gets turned down by a tired, frustrated surgeon that’s just recently had a bad result, and the cardiologist doesn’t pursue it and get a second opinion, that patient will be turned down, where something could have been done.”; surgical skill and experience – while surgeons are mentored in the operating room, there is not the same kind of mentoring of decision-making, and this skill develops over time and with experience – for example, one less experienced surgeon said, “I know I feel that there is only a certain amount I can do guaranteed, and I don’t really want to cross that boundary. So you tend to turn down some patients who are definitely high-risk patients. You’re not working right at the limit; you’re working just shy of the edge”; and closely tied to the experience, skill set and confidence

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of the surgeon, was the ability to assess risk and predict outcomes. “The risks you are willing to accept are much higher because the benefits are potentially higher [with high risk patients]. So you have to tailor it to the patient’s situation.” One guideline or tool to assist in priority setting in Ontario is the Urgency Rating Score (URS). This score is a careful weighting system wherein a collection of clinical factors are each assigned a weight, and then combined to generate the URS (angina symptoms, coronary anatomy, non-invasive test results, left ventricular function and co-morbidities) which is used to recommend patients’ maximum safe waiting time to surgery [6,49,50]. However, many surgeons believed that the URS was only minimally helpful in clinical decision making—for example, “I think what’s more of an urgency rating score is the guy who stamps his feet.” and “If you have the same medical urgency for a 90 year old versus a 45 year old . . . they may end up with the same urgency score . . . [But] I doubt any rational surgeon in this country would consider those two people the same . . . And I think that decision is made all the time.” The type of surgical practice affected the surgeons’ decision making and the process by which priority setting decisions were made. Two of the three departments in this study were individual practices while one department was a group practice. The type of surgical practice affects the method and amount of remuneration for surgeons as well as the infrastructure of the department and the relationships between surgeons. Surgeons in group practice used words like “collaborative”, “cooperative” and “shared” to describe the working relationship between colleagues while surgeons in individual practice used words like “competitive”, “isolated” and “responsible” to describe their own practice and the relationships between colleagues. “If you get too big a place with an individual practice, one gets a prima donna eventually . . . One guy does his thing; the other guy does his thing. They don’t communicate. There’s no cross fertilization.” Some younger surgeons in individual practices spoke of experiencing “pressure” to maintain a limit on the number of “chronic” patients in the intensive care unit and their consumption of resources for their patients’ care, in comparison to other more experienced surgeons. This desire not to be an “outlier” in terms of resource use affected their decision-making. Younger

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surgeons spoke of taking less risks in making decisions, accepting lower risk patients and avoiding high risk patients at certain times in order to keep their statistics for resource use, length of stay, morbidity and mortality within the average or less than average. For every cardiac surgeon, resource constraints had a direct effect on how many and what type of cardiac surgeries can take place. “We’re always burned by our bad experiences . . . So I won’t go that far out for a while . . . it’s not a good feeling” and “I often think to myself, if there was no cost to operating on a patient or operating on bad patients, . . . in that I have to defend what I did, you would do a lot more. You would say, well, I think I can help this person. Let’s have a go.” 3.2. Publicity Reasons relating to patients’ clinical factors and those relating to patients’ psychosocial or lifestyle factors were usually well communicated by surgeons to patients and families prior to surgery during office visits. Reasons related to the context in which decisionmaking occurs were not well communicated by surgeons and others because they felt these reasons were too cumbersome or burdensome, and they lacked the skills to articulate these kinds of issues to patients. Many tended to frame the decisions to the patients as purely clinical when they were not. They reported not communicating these kinds of reasons to patients out of fear or eroding the fundamental trust patients have in their physicians and creating an environment of mistrust, conflict and tension. Triage rounds, held at each centre once weekly, were the one opportunity for a group discussion of reasons behind decision making. However, only the clinical team attended these rounds, and there was resistance to opening them up to public scrutiny. “It would be awful if patients’ families were invited because we’d be embarrassed and they’d be appalled probably at the whole process, because it’s done in a somewhat superficial, cavalier way.” The main goal of triage rounds at all three centres is to discuss difficult prospective surgical cases in an attempt to achieve a consensus of opinion, provide back up for a difficult decision and offer protection by group consensus for making and supporting a decision that may not be clear to an individual surgeon. How-

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ever many participants felt that these goals were not achieved or realistic. “If I have to make a decision, I have to carry the consequences of my decision-making. If [the group] makes the decision, everybody walks away from the meeting not giving a damn about the decision . . . it’s no longer mea culpa.” 3.3. Appeals/revisions The main mechanism of appealing decisions was a semi-formal one—the second opinion. Surgeons help to facilitate second opinions by giving patients, families and referring physicians’ direction and assistance in seeking a second opinion from an appropriate clinician. “The odd time there’s two surgeons, and one would say, oh, I’m not really crazy about this case. And the other one would say, I think it has a go. And in that case then, what happens is, the cardiologist gets together with the surgeon who’s a little more willing to take it on.” 3.4. Enforcement Decision makers in cardiac surgery function within institutions and departments, as well as larger structures and processes such as the Cardiac Care Network of Ontario (CCN) and the Ministry of Health and Long Term Care. However there is no evidence that, at an institutional, departmental or provincial level, there is enforcement of the conditions of accountability for reasonableness or similar kinds of conditions. According to participants, although publicly accessible documents from the CCN reflect recommendations for a more transparent, integrated and coordinated system of delivery of care, this was not implemented in the reality of day-to-day priority setting [45–47]. The URS is a tool that is well articulated in documentation from the cardiac surgery literature as well as documents from the CCN, that was developed to provide a standardized, systematic approach to priority setting in cardiac surgery. However, according to the key participants, it is not consistently used by those clinicians most responsible for decision-making and is of limited value in their decision-making processes. They felt that it was of more relevance for data collection clerks who collected data to enter into a provincial database. “Even if an urgency score says a patient can wait, and the surgeon feels that this patient really can’t, they have that, again, intuitive knowledge. So they’re

going to do a patient sooner, even if their score says that they can wait.”

4. Discussion Previous research has described issues of priority setting in cardiac surgery in Canada [2–7]. Priority setting in cardiac surgery is seen as simply a problem of how to manage waiting lists and the use of decisionmaking tools, such as the URS. There is little attention in the literature to other types of priority setting decisions, such as the initial decision to accept or refuse a patient for surgery. In addition, the URS is advocated as a useful decision-making tool, yet the literature does not include any reports of how decision makers, such as surgeons and cardiologists, actually use this tool. There is almost no attention to the everyday experience of the decision makers in cardiac surgery. To our knowledge, this is the first study to describe actual priority setting practices for cardiac surgery. Moreover, it is the first study to evaluate these practices using an ethical framework. Accountability for reasonableness has previously been used to evaluate priority setting at a macro, or health system level [60] in hospitals [51–55], and in critical care programs [56,61,62]. 4.1. Relevance Decision making in cardiac surgery has been perceived in the literature as fairly stable and based on strictly clinical reasons. However, it is the non-clinical reasons that surgeons stated had a strong impact upon their decision-making, and often were the reasons upon which the ultimate decision was made. Despite the existence of a tool for decision-making, the URS, most surgeons do not use this in their decision-making and rely instead of their own judgment. Many of the surgeons in our study stated that the URS is not adequate as a clinical decision making tool as it is one-dimensional and not reflective of the complexity of patients who they are assessing and the reality of the system in which they work. Some of the non-clinical reasons, not captured by the URS, related to the patients and some to the surgeons. Some reasons such as age and obesity are labeled as controversial because they have been traditionally considered to be factors contributing to higher risk despite no consensus among clinicians or within

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the literature. Advanced age has been labeled by one author as a “psychological barrier” for surgeons [48]. Another reason – resource constraints – weighs heavily on most surgeons when they are making decisions, particularly about difficult or more challenging patients’ cases. The potential higher use of resources for more difficult patient who may be more likely to have complications and a prolonged length of stay, was always present in the surgeons’ minds, and participants cited frustration and moral tension regarding these constraints. The evolution of decision-making abilities by younger surgeons was a most interesting and unexpected finding. Younger surgeons stated that they felt pressure to use minimal resources but did not yet have well developed decision-making skills to select patients who would ultimately use fewer resources. Moreover, while they had strong mentoring in the operating room, but that they learned decision-making skills in an isolated and retrospective manner, often by trial and error. Hence, some younger surgeons expressed a lack of confidence in their decision making, which for some translated to a hesitancy to accept more challenging. The type of surgical practice was an important factor in the overarching milieu of decision-making. Most surgeons in individual practice felt constrained and isolated in their decision making, while those in group practices felt supported in their decision-making. This factor has not been described previously as having an effect on the way that surgeons make decisions. Another factor which is poorly described in the existing literature is that of resource utilization constraints. Surgeons described pressure from their departments and institutions to use fewer resources; however they also find themselves faced with patients that have more complex situations and therefore, a higher acuity. This tension between the expectations of administrative bodies and the reality of the necessity of resources to operate on the population of patients is described by most surgeons as having a deleterious effect on their ability to run their practice as they wish and make independent decisions. The finding that cardiac surgeons-based decisions on criteria other than medical ‘need’ corresponds to the findings from previous studies [8–10,57]. Our study identified specific non-clinical criteria and discussed them in more depth than previous studies. Previous studies focused in narrowly on factors such

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as lifestyle choices and psychosocial situations. The surgeon-specific and contextual factors identified here, such as resource utilization constraints, type of surgical practice and being on-call, have not been identified or described in previous studies. This may well be considered an example of a good practice as patients are approached from a holistic perspective. It may also be considered concomitantly an area for improvement as use of these factors in decision making, while poorly described, contributes to inconsistency in decision outcomes and outcomes of decision making processes. 4.2. Publicity Some of the non-clinical reasons identified in our study are not well communicated to referring physicians, patients and families. Often, refusals for surgery are framed in a purely clinical way, when the decisions are actually based on a cluster of factors including clinical reasons, non-clinical reasons, and those reasons related to the surgeon, context and institution. This finding corresponds to the work of Hughes and Griffiths [9,10] as well as Giacomini et al. [8]. In addition, contextual and surgeon-specific reasons are poorly articulated in general and not addressed within the group in triage rounds. Often, reasons given for refusal or acceptance of patients at triage rounds are framed medically. However in interviews, surgeons identified that they often are making decisions based on the contextual reasons and surgeon specific reasons they identified and described. This lack of transparency regarding the rationales behind decisions has four potential effects. First, patients may be refused for contextual or surgeon specific reasons yet the decision may be framed to the referring physician and patient as a medical issue. Therefore, there may be patients who are refused for surgery who do not seek a second opinion and may be eligible for surgery. This also results in referring physicians not having access to all the reasons behind the decisions made, and therefore they have incomplete information upon which to form their further plan for care. Second, this provides a misleading account of how decisions are made for junior surgeons and surgeons in training, who attend triage rounds and observe decision making as part of their learning. Senior surgeons acknowledged that as junior surgeons, they too learned by making poor decisions with negative patient

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outcomes and making changes to their practice and decision making as a result of these poor decisions. The more senior surgeons in this study acknowledged that this ad hoc retroactive method of learning how to make decisions can be not only intimidating and demoralizing for young surgeons, but it can also lead to potentially deleterious outcomes for patients. Third, this lack of transparency leads to misconceptions regarding how surgical decisions are made and, according to the participants here, contributes to stereotyping and a general lack of understanding of the experience and daily challenges of being a surgeon. Fourth, lack of open discussion about surgeon specific and contextual reasons that affect decision-making result in a lack of opportunity for debate and the possibility of change or reform. 4.3. Appeals/revisions Lack of publicity or explicitness about the kinds of reasons that affect decision-making has a direct impact upon the appeals process. While there is strong support among surgeons for those patients and referring physicians seeking second opinions, there may be those who either do not seek a second opinion believing that there are medical reasons for refusal. Potentially, the lack of communication regarding the full spectrum of reasons used in decision-making could result in a patient not receiving a surgery who might clearly benefit. There also may be situations where second opinions are sought, without full information on the kinds of reasons for the original refusal. Therefore, it is difficult for referring physicians, patients and families to make well informed decisions regarding the second opinion without full disclosure and acknowledgement of the kinds of factors that have an impact on the decision making process in the first place. 4.4. Enforcement The departments and the institutions in which cardiac surgery priority setting decisions are made do not take steps to meet the conditions of accountability for reasonableness that contribute to legitimate and fair decision making. Moreover, they do not monitor or support priority setting in cardiac care. While one of the centres distributes a memo to surgeons outlining their resource usage relative to their colleagues, this practice discouraged a high use of resources and did not

contribute to learning or developing skills in decision making in any meaningful way, except to make direct comparisons between one surgeon’s resource use and another. According to participants, the priority of their departments and institutions is on effective resource utilization and decreasing high resource use as much as possible. Most participants also stated that there is a lack of discussion of how this overarching priority “trickles down” to everyday priority setting decisions. This “trickle down” effect causes everyday decisionmaking to become a series of “moral stress tests” for clinicians [58]. The provincial regulatory body, the CCN, provided overarching principles by which cardiac care “should” be delivered [45]. These are very broad recommendations and have little relevance to the challenges of everyday decision making described here. Additionally, the CCN has no jurisdiction over the way in which decisions are made, either at the institutional or departmental level and therefore are not in a position to regulate, monitor or enforce principles. Enforcement of the conditions of accountability for reasonableness is therefore left to the institutions and departments, which clearly have competing priorities. 4.5. Good practices and areas for improvement As an evaluative tool, accountability for reasonableness can help to identify good practices as well as areas for improvement in priority setting processes. In this study, we have identified four best practices. First, surgeons use a much broader collection of reasons in decision making than what is represented in the literature or reflected in tools like the URS. They use a holistic approach to patient care and decision-making by considering patients’ physical, social, psychological and lifestyle factors. From one perspective, this might not be considered evidence of a good practice, as it can lead to ad hoc decision-making and different treatment of similar cases by a variety of surgeons. However, it does show thoughtful consideration of the patient as more than simply a sum of their physical findings and diagnostic test results, and an acknowledgement that decisions and patients are contextual, situational and dynamic. Additionally, this demonstrates that surgeons are concerned, conscientious decision makers who experience anxiety and a

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strong sense of moral responsibility for making decisions regarding their patients. Second, there have been changes made to triage rounds at one centre since this research was carried out to make the process more effective and beneficial for patients, and to increase the learning aspect for junior surgeons and those in training. In an attempt to enhance the effectiveness for patients whose cases are presented at these rounds, it is now strongly encouraged that the attending physician directly responsible for the patient being considered for surgery attend rounds at the patient’s advocate. Educational focused rounds have been coupled with triage rounds and discussions of morbidity and mortality have been incorporated into the triage round format. This helps to demonstrate to junior surgeons that while triage rounds still have a focus on decisions regarding individual patient cases, these decisions occur within a larger context with serious implications. Third, surgeons have a strong commitment to making the process of seeking a second opinion an effective one. Most patients are encouraged to seek second opinions and assisted with the process. It is most often done in an open and straightforward way, facilitating the process for patients and referring physicians. Fourth, most participants in this study discussed a significant disconnect between the goals of their institutions and their own professional and personal goals. They stated that their institutions were overly concerned with resource utilization and that there was a lack of knowledge within the institution regarding how decisions are made at a clinical level. Surgeons talked about becoming more involved in the processes of meso level decision making because of the strong influence these processes exerted upon their clinical decision making via a “trickle down” effect. While this may not be an obvious example of best practices, it does demonstrate that those making clinical decisions have reflected upon their roles, as decision makers practising as part of a larger institution and context. This stated desire on behalf of surgeons for more internal publicity regarding decision-making and increased involvement in the institutional decisionmaking process is a beginning step to increasing publicity and widening the involvement of stakeholders at a broader level. We also identified four areas for improvement. First, there is a need for greater publicity of the reasons used in decision making at all levels of the process and between all stakeholders within the process. This

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would start with increased discussion about reasons among surgeons and those closely involved in the decision making process. This increased publicity must occur not only for the benefit of the public, but also other involved clinicians and decision makers including those at the meso level. Daniels and Sabin state that with increased understanding of decision making, the public acceptance of limit setting decisions may more easily follow [13]. Publicity of the reasons and the process of decision making in cardiac surgery would strengthen the physician–patient relationship, make surgical referrals more efficient and relevant and improve the process of seeking second opinions. Second, there should be a revision of the standard decision making tool, the URS, addressing the context and social process of decision making. The URS currently does not reflect patients’ social, psychological or lifestyle factors that surgeons stated were important factors in their decision-making. Additionally, it does not reflect reasons related to the context of surgical practice in which decisions are made. Third, there should be consideration of widespread adoption of a group practice model for surgical practices. This study demonstrated that the group practice created an environment of increased support, collaborative decision making and collegiality, which supported decision making, even those decisions with negative outcomes. Junior surgeons in a group practice reported feeling more support and mentoring of their decision-making abilities. Tensions and difficulties expressed by surgeons in individual practices might be ameliorated by adoption of a group practice model. Finally, there should be increased discussion from departmental and institutional levels regarding the publicity of reasons for decisions, thereby increasing the awareness of how decisions are made at the clinical level. This increased awareness and explicit discussion has the possibility of eventually lead to more formal monitoring of priority setting decision making to ensure and support fair and legitimate decision-making.

5. Limitations The results of this study have limited generalizability. This case study was carried out in three complex urban teaching hospitals in Toronto with a small cohort of surgeons, nurses and cardiologists. The findings and

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implications arising out of them might not be the same in smaller cardiac surgery centres, or those without a teaching hospital focus. Clinicians in cardiac surgery centres serving a greater rural population may have different issues of concern than those stated here. The decision-making processes described here, however, are not meant to be generalizable. Instead the goal of this study was to present a description of the processes of priority setting decision-making. However, even with limited generalizability, the decision-making processes, challenges and lessons documented here have resonance for other settings. Many of the factors described as having an impact upon decision-making are contextual, administrative or institutional factors and may well be relevant to other centres, settings and institutions. Certainly some of the good practices and areas for improvement described in this study could be applied to other cardiac surgery setting and other contexts.

6. Conclusions This study has described the process of priority setting decision-making in cardiac surgery and evaluated it using the ethical framework ‘accountability for reasonableness’. Accountability for reasonableness is an effective evaluative tool for evaluating priority setting decisions in clinical programs, leading to the identification of best practices and areas for improvement [59]. The best practices and areas for improvement that we have identified in this case study can be used to reflect upon the present tool used in priority setting and improve the fairness and legitimacy of priority setting decision making in cardiac surgery.

Acknowledgments This research was supported by an operating grant from the Canadian Institutes of Health Research. Dr. Walton was supported by a Canadian Institutes of Health Research/Canadian Health Services Research Foundation/Canadian Nurses Foundation Doctoral Fellowship, and for part of the research was also supported by a Lupina Foundation Program in Comparative Health and Society Doctoral Fellowship and a Faculty of Medicine Fellowship, both at the University

of Toronto. Dr. Martin is supported by an Ontario Ministry of Health and Long-Care Career Scientist Award. Dr. Singer is supported by a Canadian Institutes for Health Research Distinguished Investigator Award.

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