The perils of medico-legal advocacy in ICU conflicts at the end of life: A qualitative study of what happens when advocacy and best interests collide

The perils of medico-legal advocacy in ICU conflicts at the end of life: A qualitative study of what happens when advocacy and best interests collide

Journal of Critical Care 51 (2019) 149–155 Contents lists available at ScienceDirect Journal of Critical Care journal homepage: www.journals.elsevie...

310KB Sizes 1 Downloads 9 Views

Journal of Critical Care 51 (2019) 149–155

Contents lists available at ScienceDirect

Journal of Critical Care journal homepage: www.journals.elsevier.com/journal-of-critical-care

The perils of medico-legal advocacy in ICU conflicts at the end of life: A qualitative study of what happens when advocacy and best interests collide Laura Hawryluck a,⁎, Csilla Kalocsai b, Joe Colangelo d, James Downar c a

University of Toronto, Rm 411N 2MCL Toronto Western Hospital, 399 Bathurst St, Toronto, ON M5T 2S8, Canada Client and Family Education, Centre for Addiction and Mental Health, Toronto, Canada c Head Division of Palliative Care, Department of Medicine, University of Ottawa, Canada d Independent Lawyer, Toronto, Canada b

a r t i c l e

i n f o

a b s t r a c t An unexplored aspect of conflicts and conflict resolution in the ICU at EOL is the role of advocacy in both medicine and law. Goal: Qualitative study to explore perspectives of SDM/patient lawyers on issues of advocacy at EOL to better understand conflicts and resolution processes. Methods: Purposive sampling with criterion and snowball techniques were used to recruit 11 experienced lawyers for semi-structured interviews. Interviews explored respondents' beliefs, views, and experiences with conflicts; were audio-recorded, coded inductively and iteratively following interpretive analysis. Recurring themes were identified using NVivo Qualitative Software. Results: We interviewed 11 participants and achieved conceptual saturation. Participants identified insufficient advocacy and overaggressive advocacy as major contributors to the initiation of ICU conflicts and the inhibition of resolution processes before and after the legal system is engaged. These breakdowns in advocacy contribute to challenges when conflicts arise, leading to prolongation of conflict-resolution processes and to outcomes that sometimes reflect the goals of legal advocacy rather than patient-centred goals. Conclusion: This study explores legal perspective of conflict at EOL and how these perspectives can be used to inform the development of better approaches to conflict resolution. © 2019 Elsevier Inc. All rights reserved.

1. Introduction Many Intensive Care Unit (ICU) conflicts about treatment decisions at the end of life (EOL) are based on disagreements about how to determine a patient's best interests- balancing a low probability of recovery against the harms caused by life-sustaining treatments and cardiopulmonary resuscitation [1-5]. In Canada, some situations of such intractable conflicts are referred to the legal system, either directly to the courts or (in Ontario) to a quasi-judicial tribunal known as the Consent and Capacity Board (CCB). Due to the disparity in timeframes between acute deteriorations in seriously ill patients and the cumbersome nature of the legal system as well as a lack of familiarity with the legal system among non-intensivists, the great majority of such EOL conflicts are brought forth for adjudication by intensivists once the patient has already been admitted to the ICU for some time and all attempts to otherwise resolve conflicts have failed [6-10,14]. Previous research exploring ⁎ Corresponding author. E-mail address: [email protected] (L. Hawryluck).

https://doi.org/10.1016/j.jcrc.2019.02.013 0883-9441/© 2019 Elsevier Inc. All rights reserved.

intensivists' perceptions of the legal system have revealed concerns about judicial expertise in critical care, the timeframes of the processes and appeals, and the rationale behind rulings [6-10]. Following recent CCB [6-10], court rulings [11,12], and the College of Physicians and Surgeons of Ontario's revised policy on decision-making at the end of life [13], there appeared to have been a chill in engaging the legal system. However, over the past couple of years intensivists are increasingly turning to the courts and the CCB to seek resolution [14,15]. Once EOL conflicts engage the legal system in particular in Ontario, three sets of lawyers are involved: those representing the Substitute Decision-Makers (SDMs), those appointed to represent the incapable patient and those representing the intensivists. All stakeholders are called upon to advocate for what they perceive to be the best interests of the incapable patient. Advocacy gives a voice to those who cannot effectively speak on their own behalf and aims to overcome power imbalances created by differences in knowledge and access to treatment. It therefore seeks to provide fairness and access to justice [16-18]. Advocacy however may also lead to polarization of positions and may have detrimental effects on conflict resolution. While previous studies have

150

L. Hawryluck et al. / Journal of Critical Care 51 (2019) 149–155

explored intensivists' perceptions of their role in conflict and the legal conflict resolution processes [6-10], the perspectives of lawyers for SDMs and patients in the ICU on the actions of intensivists and existing means of conflict adjudication have not been studied. In this paper, we will present the perspectives of the lawyers who represent SDMs and patients on medical and legal advocacy at EOL in the ICU setting in order to examine how to better prevent some conflict situations and improve the quality of resolution processes for all involved.

2. Methods 2.1. Study design We conducted a qualitative study, using semi-structured interviews to explore the beliefs, perspectives, and experiences of lawyers whose practice involved health law cases about withdrawal or withholding of life-sustaining treatment heard by the CCB or the Ontario Superior Court. We followed a constructivist paradigm [19] with a focused inquiry on the various ways in which lawyers understood or made sense of representing or adjudicating end-of-life cases in their professional practice.

Table 1 Legal community members' characteristics (n = 11). Demographics Female Age, mean Race/Ethnicity White Black Other Religion Christian Jewish Non-religious Other Professional Role Patient Lawyer CCB Member CCB Chair Other

5 52 (range from 36 to 64) 9 1 1 3 4 3 1 9 2 1 2

N.B. Some of these legal interview participants play or have played several professional roles, depending on the case, which they reflected on in the interviews. CCB: Consent and Capacity Board of Ontario.

3.1. Issues in medical advocacy 2.2. Participants and sampling Purposive sampling with criterion and snowball techniques [20] were used to recruit members of Ontario's legal community for one on one interviews between May and June 2016. We aimed to include current and former chairs of the CCB and lawyers representing incapable patients at the end-of-life or their SDMs in ICU conflicts in front of the CCB or the Ontario Superior Court. The study was approved by University of Health Network's Research Ethics Board and all interview respondents provided informed consent to participate.

2.3. Data collection and analysis Semi-structured interviews were conducted in person in lawyers' offices by a cultural anthropologist with prior experience in health service research (CK). The interview guide was based on research team expertise and a literature review on decision-making and conflict resolution regarding the withdrawal or withholding of life-sustaining treatment for patients nearing their end-of-life (see Appendix A). Interviews were audio-recorded and transcribed verbatim. We coded the transcripts inductively and iteratively [20,21]. One investigator (CK) read and coded the first five transcripts to determine major themes and identify areas for additional inquiry. Two other investigators (LH, JD) also independently read the first five transcripts and approved the preliminary coding scheme. Through discussions with the research team, CK and LH analyzed the remaining transcripts to refine and expand the coding scheme using the constant comparison method. Data collection ceased when conceptual saturation was reached [20]. NVivo Qualitative Software was used for data management and storage.

3. Results We conducted semi-structured interviews with 11 members of the legal community (Table 1). Interviews lasted on average 57 min (range 20–100 min). Coding revealed the major themes of issues in medical advocacy and legal advocacy in the initiation and propagation of conflicts in the ICU. Insufficient advocacy and overaggressive advocacy was perceived to contribute to the initiation of conflicts and to inhibit the resolution processes before and after the legal system was engaged.

3.1.1. Breakdowns in advocacy Respondents felt that many conflicts arise from Intensivists' failures to be effective advocates by failing to appropriately represent the patient's situation by being clear, firm, and consistent when communicating poor prognosis to families: a. The difficulty so many doctors have of being firm and honest and candid in a way that can be heard by family members in these highly unusual circumstances. So I know a great deal of work has recently and is still being done to teach doctors better communication skills, but there's a fundamental disconnect between a family who will grasp any straw and a physician who realizes there is no straw. (Respondent 1) b. Some of the problem is supported by the healthcare system that does not give people the bitter truth. (Respondent 2) Respondents reported that intensivists commonly engage in the practice of ‘masking’ suffering and the ravages of critical illness from families: c. You don't see the intravenous. And you don't see what they had to go through to make him look so good. And then, someone says, why kill him? Look, he's resting peacefully. (Respondent 1) Intensivists were also seen as failing to advocate for patient ‘s best interests (“caving”) and not being committed to the patient's best interests in that they continue to offer interventions outside the standard of care to avoid conflicts. This was identified as particularly true when decisions involve life-sustaining treatments and CPR, when SDMs insist on continuing these treatments even though they will not change a patient's outcome: d. And if anything, we see people just caving in to the families, to the substitutes for the patients, if they demand things. (Respondent 3) e. [The doctor] has no skin in the game. It's not his nickel. He’s getting paid regardless of who the patient is, and if he can ignore the moral distress of torturing a patient without doing anything about it, then he can go home and sleep well at night. What's his interest in this process? Besides which, he's going to be off for the next three weeks in a row, and with any luck, the patient will have died and been replaced before he has to come back and suffer anymore. (Respondent 5) f. But then we see physicians not ever wanting to go before the board. I had a person say to me, “We just concede to the substitutes rather than go to the board, even though we think it's totally wrong.” And I'm shaking my head. (Respondent 11)

L. Hawryluck et al. / Journal of Critical Care 51 (2019) 149–155

g. From a family perspective, there's coercion there too, you know? […] You know if you don't do this I'm going to go to the college. If you don't do this I'm going to sue you. If you don't do this I'm going to go put your name all over the newspaper, I'm going to have a press conference. So it works the other way (Respondent 10) Respondents stated that intensivists do not understand that not all treatments need to be offered, although it was viewed as crucial for intensivists to explain their reasoning for such non-offers: a. Like health practitioners have the right not to offer something, if – to meet this standard. And that's their professional role. They don't have to offer anything. (Respondent 11) b. An available treatment is not in the legislation. The legislation starts from a point of basically treatment will be proposed. (Respondent 3) c. No treatment should be offered where it's not within the standard of care to do so. (Respondent 6) d. There's no requirement on health professionals to offer treatment that is outside the standard of care [but] is probably appropriate to discuss the options. (Respondent 5) Respondents identified that intensivists often didn't prepare the families for the situation of acute devastating or advanced illness. They didn't explain the patient's condition early enough, and discussed patient wishes and values too late. Respondents further identified that intensivists often failed to meet their obligations to explain the role of the SDM as defined in law (i.e. to make decisions in accordance with the patient's previously expressed wishes or in accordance with the patient's best interests): o Often [SDMs] come to see me, and I'm the first person to have told them that this is how they're supposed to be making decisions. I think often they feel that a decision has been presented to them as a black and white choice and there's no nuance to it. And no guidance as to how they apply that decision to the individual for whom they are making it. (Respondent 4) o Sometimes the substitutes don't even know what their role is. And actually, that's the obligation of the health practitioner's side. (Respondent 11) o We see a lot of difficulties when a person is presented with a decision they need to make, health practitioners do not tell them about the best interests criteria. (Respondent 8) Respondents stated that giving SDMs more time to accept a poor prognosis is often needed: o But I think if physicians try to rush the process and not take the time to explain, then that's where the tension exists. (Respondent 3) Yet respondents also identified a greater need for intensivists to acknowledge that some SDMs will never consent to withdrawal of life support, and therefore a greater need to engage the legal system. Respondents stated intensivists could have avoided difficulty by initiating legal processes earlier when disagreement occurred instead of failing to see the dispute was intractable and trying in vain to resolve it over time: o Doctors frequently leave the application to the Consent and Capacity Board longer than they have to….That means they will spend a month trying to reason with the family, instead of realizing on the second day that this family will not be reasoned with. (Respondent 1) Finally, respondents recognized the ‘cost’ of not resolving such conflicts both in harms to the patient and in the lack of resources for others requiring urgent or emergent treatments: o But one of the consequences of that is we are spending huge amounts of money on the most vulnerable people in our society, namely people who have lost capacity to make their own decisions, who are dependent for literally everything they require to survive on physicians and hospitals, and we're torturing them. And the decisions that their families are

151

making – if they're wrong decisions – are not being challenged. And that creates an unethical treatment regime for the patient. (Respondent 3) o So from the emotional perspective of the family, there's always hope “God will save,” “our religious beliefs don't allow” – from all of those perspectives come treatment decisions that are wrong in law, that are contrary to the person's best interests quite frequently and that nobody seeks to enforce, at a cost of approximately a million dollars per year per patient, and what a lot of people don't recognize is if [the patient] is in that intensive care bed for five months, there's not an extra bed around. (Respondent 1) 3.1.2. Overly aggressive advocacy Conversely, respondents stated that when intensivists invoked the medical standard of care in advocating for a patient's best interests when choosing not to offer certain treatments, this had the potential to disempower the patient or family. They identified a lack of transparency and consistency in how intensivists determine the medical standard of care and the line between benefit and harm. The medical standard of care was perceived as unassailable to external review and public and legal challenge due to differences in knowledge between patients, lay family members, their lawyers, problems accessing other expert physicians, and a failure to acknowledge scientific uncertainty: o It's difficult to have a conversation about what should be done when the doctors will just say well, nothing's available because I'm not offering it. I'm not offering it because there's no benefit. […]There's also no mechanism for balancing the medical assessment with those other, maybe less tangible, considerations like values of the patient dying (Respondent 6) o [….] A very broad amount of discretion for the doctors' assessment of risks versus benefits. And it's almost immune to challenge. (Respondent 2) o I don't have a problem with physicians saying that certain things are their decision and not the decision of a substitute decision-maker, as long as the SDM is not being bushwhacked, ambushed, and as long as if there is any significant disagreement, it gets adjudicated instead of the SDM being overrun. (Respondent 1) o So they'll say something like well, we're doing it. Even if there's a mechanism for a dispute resolution. And figuratively, that's saying basically, try and stop me. (Respondent 5) o They [SDMs] don't know what the real options are. They're not always told all the options. They're basically told this or this. Or we find that this particularly at end-of-life. (Respondent 11) o And sometimes the debate is really just how to we weigh values versus medical assessment. (Respondent 8) o There's also no mechanism for balancing the medical assessment with those other maybe less tangible considerations like values of the person dying. (Respondent 6) o It's always been my sense that physicians and those who set a standard of care don't acknowledge that there are any values that go into that mix. (Respondent 10) o You're going to have to take this doctor's view of the standard of care and match it against someone else. So if you've always got standard of care from the person whose care treatment is in question there would be no liability ever, right?(Respondent 10) o It results in bullying, I find. I've run into this strategy which appears to me from the litigators on the side of the hospitals and doctors that I call the ‘stop me if you can’ approach. (Respondent 6). Some respondents stated that consideration of the medical standard of care alone is insufficient and suggested intensivists should consider time-limited requests for interventions outside the standard of care that would not cause significant harms, yet would have meaning for the patient or SDM whether this value was personal, social, cultural or religious in nature:

152

L. Hawryluck et al. / Journal of Critical Care 51 (2019) 149–155

o A substitute decision maker says look, all I want you to do is try this one last treatment. If it doesn't last, I'll agree with you. Let's give it a try. For how long? Three weeks? Let's try. I mean, and that's what this particular substitute decision maker had been asking for….[….] There could have been a very simple resolution within a three week period, where the son would've felt good, and this could've been resolved. (Respondent 5) o You can appreciate that there's only a limited amount of resources available to everyone, and if their action may be preventing someone else from really benefiting from this, so. It's one more treatment for three more weeks and it's not going to cause any harm, my goodness, let's just do it. And then the family is happy, they're not waiting for a miracle. (Respondent 4) o I think that the standard of care is constantly shifting and it can't be presented as this is it, this is what it is. I'm not going to discuss it with you, you wouldn't understand it. And I feel that sometimes physicians don't really know how to address that, not when their patient is challenging them but when their patient wants to talk to them about what other options are there… […] the health practitioner has to offer fairly. (Respondent 11) Respondents stated they had been involved in situations where intensivists over-emphasized the patient's suffering; where they refused to offer certain treatments in order to sway decision-making in favour of the intensivists' proposed treatment plans: o I think that discussion, too, has to be done in a respectful, non-coercive way so that the discussion continues to be respectful around standards and not dragged into the emotion of how could you let this happen to your mother if you don't agree with me, which is really what is being said. (Respondent 9) o So patients know what available treatments might be. We're not talking about somebody trying to get a doctor to propose an amputation to deal with a common cold, like not something that's bizarre. It's something that's available for the person that the SDM wants to be offered so that they can say yes to it, for whatever reason. (Respondent 6)

o It's like I'm recommending you do this, right? Give me a yes or a no. And the answer I want is yes, right? So there's no dialogue. (Respondent 8) o Don't know if it's just about end-of-life. People misrepresent to patients about what are potential options. They don't tell them some things. And people find out… Like we're in a world of Google and everything else, and I'm not advising anybody to play Google doctor, but, yeah, when people are warned about things and then they don't get answers to it when they ask about it or it's just dismissed. (Respondent 11) 3.1.3. Issues in legal advocacy Once conflicts engage the legal system, an independent legal representative is appointed for the ICU patient, separate from that of the SDM (s). Each has different responsibilities and obligations that respondents also identified as hindering the conflict resolution process. Respondents recognized system issues that result in power imbalances in favour of intensivists, such as the high costs of hearings and litigation, easier access to independent medical experts, and the greater familiarity of intensivists' legal representation with the CCB process. (Table 2). 3.1.4. Advocacy by SDM lawyers: differences in representing client and patient best interests From the perspective of lawyers representing SDMs of incapable ICU patients, their role is to achieve their client's goal or position to keep the patient alive, continue life-sustaining treatments and/or ensure provision of CPR at the time of death. This representation of the client's goals does not mean seeking conflict resolution by arguing about the ICU patient's best interests as defined in legal statute: o You try – your client has a goal. Your client doesn't know the law. The lawyer knows the law…And the lawyer's job is to figure out how to achieve the client's goal through the law. (Respondent 2) o When my substitute decision-maker client says to me, “Keep grandpa alive,” they're not saying it's in dad's best interest to be kept alive. They're saying “keep him alive.” They don't want me to argue with them. They want me to keep grandpa alive. (Respondent 1)

Table 2 System limits on legal advocacy in the ICU at EOL Litigation costs

Access to medical experts

Availability of Skilled legal representation

Timeframes

So for example, if the substitute decision-maker retains me and says, “Keep my father alive,” then here is my answer. “Okay. I've looked at the case. I think you're going to lose. It will cost you $10,000 in legal fees to lose at the Consent and Capacity Board. It will cost you another 10 to $15,000 to appeal that decision and lose at Superior Court, but that will buy 1 to 3 months. And then, it will cost you a further $30,000 to lose at the Court of Appeal, and that will add another 2 to 6 months. How much do you want to spend on grandpa's life?” (R1) God, just litigating is expensive, when it comes to that. Huge problem. Doctors have seemingly unlimited resources. Doctors, I should say doctors and hospitals, I never know who's really paying. That's a huge problem, (R6) You know, the other problem is to financial, it's hard for families. […] I mean it's just an access to justice issue. (R3) Again, because the cost of litigation is ridiculous. Unless you've got bags full of money that you want to just throw in principle at something, it doesn't pay, and most people aren't in that situation (R9) But if he had have been willing to admit that, we knew it wasn't the case. But how do I prove that? You need an expert. You need to hire a doctor who's a specialist in ECMO machines to come to the hearing and say, “No, there might be a chance.” And those people can't afford that. And Legal Aid, even if they agree to pay for it, it's hard to find [someone] that will take it that will do it for what you're willing to pay. So these are problems with the process (R1) The PGT staff will ask for a second opinion or ask for an external consult if that's possible. But it's very different when you're dealing with a situation in the GTA where there are many hospitals and lots of, you know, specialists as opposed to a situation in some more remote setting where there probably aren't. And so getting a second opinion is not really possible and so our staff have to make decisions throughout the province (R10) You know, in my lawyer hat doctors are very reluctant to give opinions about people they haven't seen. They can maybe like you're not going to find a physician who is going to kind of put their reputation without seeing their chart review, without seeing a patient. I mean maybe you will but in my experience, that's a bit of a challenge.(R 10) It's usually difficult to find experts where it's not an often used area. (R4) Access to second opinions would be good. And I mean, legitimate second opinions from independent doctors, not from the guy who probably goes golfing with his buddy on the weekend and has the office next to him. (R3) It's such a fragile state to be in. The last thing you want is a lawyer coming in and adding to that. I mean, it's the worst case scenario. And if the lawyer is not aware of the law and how to apply the law, then you have people becoming very confused because they may not know the laws, and in picking the lawyer, the substitute decision maker may not have the funds (R 3) And this is a lawyer's perspective, but I think at the end of the day I just feel that – like it's not like a real estate transaction where you can screw up, when someone can compensate, like can't – you really have to get it right, you know? (R2) We do need… adjudicators that are knowledgeable and hopefully have the ability to ensure that all parties know that they're being heard and that all parties have faith in the system, (R6) And from the doctor's perspective, of course, well, now we've got grandpa for six more months of torture, as we work our way through the appeal system, the courts need to figure out how to expedite that to re-enhance the physicians – and just, by the way, some of the lawyers who represent those physicians, because there are some lawyers who are highly critical of how long the process takes, and with some legitimate observation. (R1)

L. Hawryluck et al. / Journal of Critical Care 51 (2019) 149–155

Furthermore, since advocacy means using legal means to achieve the client's goal, respondents identified intensivists' misunderstandings, misperceptions of the law, and the delays inherent in the CCB and/or court system as strategic means to achieve the client's advantage by deliberately prolonging the process: o And I feel even worse about it for the physician if he doesn't understand the legal nuances. Now, I'm obliged, to some extent, to take advantage… (Respondent 2) o An appeal acts as a stay. So if a family member wants to keep a relative alive and the board renders a decision against them, why don't they just file an appeal? And until that appeal is heard, the treatment cannot be withdrawn (Respondent 3) o So strategically, even if your case doesn't have a lot of merit, even if you think you're going to lose your appeal there might be strategic in appealing it to the Board of Appeal, because it's going to take the time. […]. Strategically, it may be of value to the family. (Respondent 4) o [I have to be] harsh to the extent necessary to convey the message that this is probably not a successful case. You're paying for delay. (Respondent 1) Respondents identified informing the SDM to information they are entitled to as part of their role in representing them as clients. o We're doing the support to get the right information from the health practitioners so the substitute for a patient can make a decision, but they do not always get – the substitutes and the patients don't know that they have the right to certain information and they don't know to ask, or they don't know what they don't know, you know? (Respondent 11) o I think often they feel that a decision has been presented to them as a black and white choice and there's no nuance to it. And no guidance as to how they apply that decision to the individual for whom they are making it. (Respondent 9) Respondents identified a negotiating role to bridge gaps between the goals of their client and the patient's best interests by clarifying the SDM's legal role, and negotiating a conflict resolution: o “Well has anybody talked to you about the criteria and the legislation? And it will be clear they've never hear anything about that before. So that's not good. (Respondent 8) o A substitute can only ask for what the physician is prepared to recommend, that this doesn't give you the right to demand something that isn't recommended by a physician. (Respondent 7) o […]Like if I see that there is room for negotiation. Sometimes negotiation doesn't work and sometimes it does. You actually find out that the doctor and the family were not that far apart and can reach a decision that they can live with. And it is much nicer. (Respondent 3) o It's often negotiating in some ways. We're not negotiating as to whether that treatment should be offered, but it's like the information around that. (Respondent 11) o I feel like the cases that may be resolved, as I say, could've been resolved if there was a little flexibility. (Respondent 6) 3.1.5. Advocacy by lawyers appointed to represent the patient Respondents who had been appointed to represent the incapable ICU patient identified greater ethical and professional difficulties, as the patient's goals are often unknown and have never been directly expressed. Respondents stated that their role was to investigate client's best interests, to ask what outcomes can possibly be achieved, and to find supporting sources of information about what is important to the client that may help resolve the conflict. They emphasized the need for context and a deep understanding of the patient as a person in order for them to provide adequate representation: o And if it's something, and when you start off representing a person like this, you need everything. So, you know, was anyone else there? Can I have their phone number? (Respondent 5)

153

o And the only thing that's right that I can see is to, number one, almost become an investigator of sorts. To try to determine, number one, whether this person ever spoke about this type of circumstance to anyone. And of course you can't ask the person, so you have to ask family members, friends, and depending on who you ask, may depend on the answer that you get, (Respondent 6) o Cultural beliefs, religious beliefs, these are all significant factors in trying to determine what the decision is for this person. Because I don't think there's a correct decision for everyone. (Respondent 7) o Can the patient be returned to whatever state they were in before this most recent event occurred? (Respondent 10) Respondents identified a need to ensure that the CCB or courts were aware of their lack of instruction from their client, and they reported that some lawyers in these situations may unconsciously interject their own personal biases or may become an additional advocate for the SDM's position. Respondents stated that becoming an additional advocate for the SDM may be particularly problematic for patientappointed lawyers who need to be paid by the SDM when this person is also the designated attorney for the patient's financial matters: o Although it may be apparent that the lawyer is not taking instruction from the client, I think the first step is to ensure that the Board is aware of that. (Respondent 5) o … The lawyer may be very religious and feel oh my goodness, no, I'm going to fight this tooth and nail because that's what the lawyer believes is the right thing to do, and that's what they would do for themselves. Do unto others as they would do unto you. So that's totally wrong, and that's where lawyers get themselves into problems. (Respondent 5) o I believe this is where lawyers get themselves into difficulty in accepting representation for individuals who practically are unable to instruct, but legally are deemed to be able to. And sometimes, the patient's lawyer either misapprehends himself or herself, or gets loped into helping the SDM beyond what would be appropriate for a patient's lawyer. (Respondent 6) o But sometimes it gets into a situation where the lawyer, knowing that the funds are coming from a certain party to pay their bill, may be more inclined to be sensitive to that party's needs. (Respondent 5) 4. Discussion Our results have identified several problems in conflict resolution processes at the EOL in the ICU that are centered on advocacy. First, when intensivists either offer everything or bluntly refuse to offer some therapies, without knowing the legal framework in which they act. Second, when the “client” and the patient are not the same person, and the interests of the client may not be the same as the best interests of the patient. This can create a troubling conflict of interest for the legal representatives, especially when the client is paying them. Third, when the client is seeking to “keep the patient alive”, this can be achieved most effectively through simple procedural methods rather than making effective arguments about the best interests of the patients. Fourth, the fact that intensivists can draw on nearly unlimited resources, which can impair advocacy for a less affluent client and detract from a “patient-focused” approach. To our knowledge, this study is the first to explore the perspectives of advocacy held by lawyers who represent SDMs and patients in ICU conflicts with intensivists at the EOL. While both intensivists and lawyers focus on the concept of “best interests” as a starting point, our study shows that other considerations often distract these stakeholders from this focus. A patient's best interests have previously been defined as the pursuit of the best state of health and well-being that is both medically achievable and valued by the patient [22]. Conflicts about how to interpret best interests engage the advocacy role of both physicians and the lawyers involved in resolution processes, but we found that the advocacy role also promotes adversarial processes as the advocates may be simultaneously pursuing different and mutually

154

L. Hawryluck et al. / Journal of Critical Care 51 (2019) 149–155

incompatible goals [16-18,23]. When advocates are in conflict, a crucial question arises: how do we keep the patients' best interests paramount in seeking resolution? Looking at the problems identified in the present study, there are some potential solutions. To reduce inconsistencies in the standard of care, and address ignorance of the medicolegal framework, a pool of experienced and independent medical experts could be retained by the court. To prevent one side overwhelming the other through resources or procedural mechanisms, specialized courts or tribunes could be convened to provide timely decisions and appeals. Lawyers may also be advised to employ the legal concept of proportionality in order to take into account the best interests of the patient without prejudicing the legal interests of the client [18,23,24]. Strengths of our study include the novelty and timeliness of the research question in the Canadian context, as well as the methodological rigour of the qualitative approach. Limitations include the fact that our participants represent one jurisdiction, but all physicians, not just intensivists, and lawyers around the world have similar roles and responsibilities in representing patients and clients and advocating for their interests, thus our study may help all stakeholders engaged in such conflicts even in non –ICU settings. We continued data collection until conceptual saturation was achieved, although it is possible that a larger sample size would have uncovered other subthemes in medical and legal advocacy which would have shed greater light on their relationship with conflict. In addition, we didn't interview intensivists' legal representatives since intensivists' perspectives have already been discussed in previous studies [6-10]. As physicians' lawyers are engaged to advocate for these physicians' perspectives, our study focused on obtaining the unique perspectives of patient and SDM lawyers to gain fresh insights into how intensivists are perceived by the other professional stakeholders in such conflict situations. Our study targeted ‘opposing’ professionals in these intractable conflicts in the hope of yielding a greater understanding of how intensivists can improve their communication, their patient advocacy and professionalism to prevent conflicts before they arise. Furthermore, once conflicts have engaged the legal system, we sought to explore any obstacles in existing legal processes that may prevent achieving patient- centered resolutions, this lack of patient-centeredness being one of the concerns identified by intensivists in previous studies [6,10]. It is possible, however, that intensivists' legal counsel may also have different insights and perspectives on the role of physician and legal advocacy, which future research should seek to capture.

5. Conclusions This study explores the breakdowns of medical and legal advocacy in conflicts at the end of life from the perspectives of legal professionals representing SDMs and incapable patients. Our findings suggest readily available approaches exist to overcoming these breakdowns to achieve improved outcomes – ones that are patient centered.

Acknowledgments This work it was funded by the Law Reform Commission of Ontario, Last Stages - LCO. Appendix A A.1. Interview guide A.1.1. Background The purpose of this project funded by the Law Reform Commission of Ontario is to capture the voices of patients, substitute decisionmakers and those members of the legal system that are directly engaged in end of life decision-making and the conflicts that may arise in the ICU, in order to explore how to create a process of improved communication, build greater understanding among these key stakeholders, prevent conflicts and if these arise devised improved strategies for their resolution. This project proposes to achieve these goals by: 1. Reviewing the existing literature to explore relevant definitions, jurisprudence, legislation, policies and frameworks used in Ontario and elsewhere and developing a common glossary of terms/definitions of key concepts. 2. Conducting new qualitative research to gain the perspectives of all stakeholders (patients, substitute decision-makers, lawyers that represent patient and substitute decision-makers who have appeared before the Consent and Capacity Board (CCB), members of the CCB itself and Superior Court judiciary) on some core considerations: a. The respective roles of MSOC and consent in decision-making in the ICU in these circumstances. b. The ways to best explain MSOC and what it means if life-sustaining and resuscitation treatments fall outside of it to patients, families and members of the CCB/judiciary. c. The principles/processes that from their perspectives would help to resolve conflicts that arise from MSOC considerations. d. The perspectives of CCB members and Superior Court judiciary on their preparedness to adjudicate MSOC issues regarding life – sustaining and resuscitation treatments. 3. Synthesizing an ethical and legal analysis of the major issues raised in steps #1 and #2, and consider some of the potential (and existing) legal and ethical policy options that might address each of these issues. 4. Developing a comprehensive set of options for policy and legislative change from step #3 that might properly balance all of the ethical and legal issues and establish the best means of balancing the need for consent/agreement with the need to respect the SOC. 5. Devise, from the qualitative data, a better means of engaging with legislators and the public on this complicated and controversial subject, in the hope of helping the Law Commission of Ontario to avoid the polarized and divisive debate that often arises when this subject is raised. A.2. Questions

Conflicts of interest In the past both Dr. Downar and Dr. Hawryluck have appeared in front of the Consent and Capacity Board in specific end of life (EOL) cases. In accordance with their professional roles they have experiences with the legal system in end of life conflict situations, but they were not involved in any cases during this research. Nor do they have any vested interests in the resolution of such conflicts different than any physicians who fulfill their professional responsibilities to patients. This study represents a component of a larger qualitative study funded by the Law Reform Commission of Ontario CanadaLast Stages of Life- LCO.

A.2.1. Challenges 1. Please help us understand the challenges you have encountered when representing or adjudicating ICU end of life cases? 2. What issues do you find the most challenging to address and please explain the reasons they are difficult to address for you? A.2.2. Medical standard of care and consent 3. How well do you think the medical standard of care is defined in these cases? 4. Help us understand the role you feel the medical standard of care should play in adjudicating ICU end of life cases?

L. Hawryluck et al. / Journal of Critical Care 51 (2019) 149–155

5. Do you feel that the medical standard of care offers any protection of patients' rights? 6. Do you feel there is any tension between the medical standard of care and substitute decision-makers wanting life-sustaining and resuscitation treatments at the end of life in cases you have represented/adjudicated? a. Or do you feel the issues are ones of consent only? 7. When physicians and healthcare teams claim the life sustaining and resuscitation treatments being requested fall outside the medical standard of care as defined in the glossary we have provided, do you feel prepared to prospectively assess the validity of such claims? a. What would make you feel better prepared/what do you feel you would need to prospectively assess the medical standard of care regarding life-sustaining and resuscitation treatments in end of life cases? 8. What are your perceptions of the use of “assent” in decision-making in the ICU at the end of life? A.2.3. Conflicts 9. We have a legal process currently in place for resolving conflicts in decision-making at the end of life in the ICU. How do you feel we could improve this process in the future? References [1] Hawryluck L, Oczkowski SJW, Handelman M. Must do CPR??: strategies to cope with the new College of Physicians and Surgeons of Ontario policy on end-of-life care. Can J Anaesth 2016;63(8):973–80. [2] Hawryluck L. The critical care perspective- in reply to last rights: Cuthbertson v. Rasouli—what the supreme court didn’t say about end-of-life treatment decisions. Health Law Can 2015;36(2):40–5. [3] Downar J, Luk T, Sibbald RW, Santini T, Mikhael J, Berman H, et al. Why do patients agree to a "Do Not Resuscitate" or "Full code" order? Perspectives of medical inpatients. J Gen Intern Med 2011;26(6):582–7. [4] Heyland DK, Frank C, Groll D, Pinchora D, Dodek P, Rocker G, et al. Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members. Chest 2006;130(2):419–28. [5] Rose JH, O'Toole EE, Dawson NV, Lawrence R, Gurley D, Thomas C, et al. Perspectives, preferences, care practices, and outcomes among older and middle-aged patients with late-stage cancer. J Clin Oncol 2004;22(4):4907–17.

155

[6] Sibbald R, 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. [7] Chidwick P, Sibbald R. Physician perspectives on legal processes for resolving endof-life disputes healthcare Q, 14(2); 2011; 69–74. [8] P. Chidwick, R. Sibbald, L. Hawryluck Best interests at end of life: an updated review of decisions made by the Consent and Capacity Board of Ontario, J Crit Care 28(1), pp.:22–27. [9] Hawryluck L, Sibbald R, Chidwick P. The standard of care and conflicts at the end of life in critical care: lessons from medical-legal crossroads and the role of a quasijudicial tribunal in decision-making. Crit Care 2013;28(6):1055–61. [10] Sibbald R, Chidwick P, Hawryluck L. Standard of care and resource implications of the Cuthbertson v Rasouli ruling. CMAJ 2014;186(5):327–8. [11] Hawryluck L, AJ Baker A, Faith J. Singh the future of decision-making in critical care after Cuthbertson v. Rasouli Can J Anesth 2014;61(10):951–8. [12] Downar J, Sibbald RW, Bailey TM, Kavanagh BP. Withholding and withdrawing treatment in Canada: implications of the Supreme Court of Canada's decision in the Rasouli case. CMAJ 2014;186(16):E622–6. [13] College of Physicians and Surgeons of Ontario planning for and providing quality end of life care policy statement #4–15 september 2015. Online http://www.cpso. on.ca/CPSO/media/documents/Policies/Policy-Items/End-of-Life.pdf?ext=.pdf;. [CPSO Council Update June 2016 Post Approval Amendments to Planning for and Providing Quality End of Life Care Policy Statement #4–15 September 2015]. [14] Sibbald R. Healthcare consent quality collaborative, Consent and Capacity Board CCB end of life cases (2010–2016) accessed March 14, 2017. Online http://consentqi.ca/ consent-capacity-board-cases/end-of-life-cases/. [15] End of life law and policy in Canada, Dalhousie University accessed May 19, 2018. http://eol.law.dal.ca/?page_id=242. [16] Royal College of Physicians and Surgeons of Canada. CanMeds role health advocate definition accessed March 14, 2017. http://www.royalcollege.ca/rcsite/canmeds/ framework/canmeds-role-health-advocate-e. [17] Sherbino J, Bonnycastle D, Côte B, Flynn L, Hunter A, Ince-Cushman D, et al. The CanMEDS 2015 health advocate expert working group report. Ottawa: the royal college of physicians and surgeons of Canada; 2014 Feb; 5–6. [18] Law Society of Upper Canada Rules of professional conduct chapter 5: relationship to the administration of justice, accessed March 14, 2017 at http://www.lsuc.on.ca/ with.aspx?id=2147502073 [19] Lincoln YS, Guba EG. 1994 Paradigmatic controversies, contradictions, and emerging confluences, Handbook of qualitative research., Thousand Oaks CA Sage; 2015; 105–17. [20] Sobo EJ. Culture and meaning in health services research: A practical field guide. Walnut Creek, CA: Left Coast Press; 2009. [21] Bernard HR, Ryan GW. Analyzing qualitative data: systematic approaches. Los Angeles, CA: Sage; 2010. [22] Hawryluck L. Issues of vulnerability and equity: the emerging needs for court evaluations of physicians' fiduciary duties in high stakes end of life decisions. Health Law Can 2017;37(4):86–95. [23] Advocate's Society, Institute for civility and professionalism, Principles of professionalism and civility for advocates. 5 accessed March 14, 2017 at http://www. advocates.ca/assets/files/pdf/publications/principles-of-civility.pdf; 2009. [24] Abrams v. Abrams. 102 O.R. (3d) 645, para 70 and see also Ornstein (Litigation Guardian of) v. Starr (2011) 108 O.R. (3d) 380, para; 2010; 51.