 Good evening. I'm Kim Brooks, the dean here at the Schulich School of Law. It's a pleasure to see so many friends in one room and a few new faces among them. Welcome to part of our mini law series. This is part of our effort at the law school to actually engage with a broader range of people on legal issues of current importance in the community. And tonight's mini law lecture will be no exception to that. When you have a dream about what the best law school would be for me anyway, it's one of those places that you want to come to because there's all kinds of great ideas and people are talking about interesting things. And so that was part of the motivation behind this series and I hope if you haven't been to one of these before that you'll use this as a jumping off point to come to others on topics that you're interested in over the rest of this year. It's my great pleasure tonight to introduce you to Sheila Wildwood, one of my colleagues here at the law school. She's currently serving as our associate director of our health law institute. She does work in administrative law, human rights, mental health law, and jurisprudence, among other topics. She is a prolific scholar and if something distinguishes or marks the kind of work that she does, it's the collaborative nature of the work she does and her ability to work well with people in other disciplines. She's often writing pieces with other practitioners and professionals in the health professions parts of the world, both in academia and beyond. And in addition to that, as a colleague I particularly appreciate her because she's got this wide ranging creative mind. So she's always interesting to talk to. She always brings new ideas to the table that I haven't thought about and so it really is just lovely to have her here at the school and I'm sure you will enjoy her as I do this evening. Thanks for coming out and I really welcome the opportunity to talk to such a, it's quite big and diverse audience tonight about something that's quite close to my heart. The topic of legal capacity as I will short form it, decision making capacity at law, quite a complex topic and a politically as well as personally important and sometimes deeply contested. So I want to start with a person, this notion of person centeredness, hopefully, you know, driving the law on capacity and our thinking on these topics. So this is a woman named Jenny Hatch and some of you may have come across this story, kind of hit the news last summer and it's a U.S. story. It happened in Virginia, but it's made quite a splash internationally since the court case that Jenny Hatch was involved in was decided and I'll tell you a little bit about it to get started. So Jenny Hatch again, lives in Virginia and she's a 29 year old woman with Down syndrome. She just won quite a legal victory. This is back in August of this year in opposing an application that her parents brought to a court in Virginia for guardianship. And this was a request for what might call plenary guardianship for a full set of decision making powers in relation to Jenny's life. So they wanted in particular to have decision making authority over where she lived and in particular they wanted her in a group home. They felt that was safest for her. She had got into a bicycle accident late one night and that was one of the determinants of their worries. They also wanted decision making authority about her medical treatment and about who she could see or have relationships with. What happened in that court case was in order for limited guardianship which went not to her parents but to these two people who aren't actually Jenny's parents. It sounds like she has a difficult relationship with her mother and her mother's second husband but also it's a complex story and they've had a long relationship of supporting Jenny. Her biological mother has but these folks own a thrift store that Jenny worked at for four years or just over that amount of time before this court case arose. And Jenny had been in group homes, living in group homes for a year or more prior to the court application. She'd been running away from the group homes. She wasn't happy there. She was really happy with these folks who run a thrift store and employ people with disabilities. They have a swimming pool. They have fun at their place and she spent a lot of time there with people that she liked. And they said, yeah, you can live with us and we're willing to do what we can to secure your safety. So what happened in the eventuality of the court case was they were granted these folks what I said, it's a temporary guardianship order of one year. And it was a limited order in that it didn't extend to all areas of Jenny's life. It was specific to medical decisions and what the judge put as safety decisions. Still a little bit broad. But the thing that the judge added in his order which made a big splash in the disability rights community in the U.S. and internationally was he mandated that this couple support Jenny through this time of their temporary guardianship, support and enable her decision making capacities during that time. What does that mean? This is what is being celebrated. That rather than simply being given sort of as a lump sort of award, the authority to make decisions on behalf of Jenny, they've been mandated to support her decision making capacities with an eye to the removal of the guardianship order at the end of the. So this is just impossible for you to read whether or not your eyes are able to process what's up here. But I'm going to read it to you anyway. I wasn't sure how best to capture this and perhaps what I can do is put these PowerPoint slides on our website so that you can go back and they'll be flashing lots of things at you that you may or may not want to write down. But let me assure you that you can go back and find this stuff and in fact all of this is on a website I'm going to refer you to in a second. So this is Jenny Hatch's writing. I'm going to read it to you. She says, my name is Jenny Hatch. I am 29 years old and I have Down syndrome. Last year I was placed in a group home. I did not want to be there. I told everyone that I was not happy and did not like it. I just wanted to go home to my friends, Jim and Kelly's. So those are the folks who you just saw in the picture. Jewish Family Services, this was the agency running the group homes, was my guardians. And then as blanked out was my case worker. She was mean to me. She yelled at me and even hit me. I was not allowed to go to my job at the thrift store. I worked there for almost five years. I wasn't allowed to have my friends or coworkers visit or even call me. I wasn't allowed to have my cell phone or computer. I felt like a prisoner, but I didn't do anything wrong. This story continues. I was told I had rights at the group homes, but that wasn't true. JFS, the agency, took them away. It was like I didn't matter, like I didn't exist. JFS took away my rights, my choices, my independence. A guardian is supposed to help me reach my goals. Instead, I was kept away from my community, my church and my friends. I kept telling everyone I was unhappy, but no one listened to me. And here's the end. I lost a year of my life being forced to stay in group homes and forced to work at a job I did not want. Who is making sure that what happened to me doesn't happen to someone else? Who is making sure that JFS is doing the right thing? Just because people have a disability does not mean they need a guardianship. Many times they may need just a little help. She says thank you, Jenny Hatch. So that was her own words of what had happened in the recent years. And with the court victory in her case, and it was supported by the American Civil Liberties Union and a particular lawyer. His name is Jonathan Martinez, the lawyer who you can see in the picture there. She managed to make the win that she did. I was just going to read you a couple of more things. So Susan Misner, who is disability counsel for the ACLU, said this just in commenting on Jenny's win that has invoked quite a response. Again, nationally and internationally, this website, this is actually the home page for a website that was just set up this week. Telling this story and giving resources to folks who are interested in this idea of supported decision making. And other resources around guardianship practices in all of the states in the U.S. So Susan Misner, who is disability counsel, involved in the case, said, commenting on the ideals behind it, I guess. She said we all grow, learn, function best when we're given increasing responsibility and opportunities to make decisions for ourselves. Guardianship is imposed on people with disabilities with some level of functioning as Jenny has, with the same level of functioning as Jenny has all the time, and they're not given a chance to show they can make decisions. So that was her comment and Jonathan Martinez, who was her lawyer, said something similar. She said, you know, we go, he said, we go to the mechanic, you know, when our car sounds a little funny and the mechanic might say, you know, the valves are the timing's off, we need to replace a valve. We say, at least I would, you know, explain that to me like I'm a five-year-old. Tell me, you know, work with me here. I don't understand how my car works. I can drive it, but explain it to me. And when I do that, said Martinez, you know, I'm engaging in supported decision making. When I do it, I'm being smart. I'm getting the information I need to make decisions, right, in the form that I can understand. But when people with disabilities need support, he said, people assume they can't do anything else. Okay, so that's just the background that I wanted to give you as we think through these difficult questions of legal capacity. So the title of my talk, what does it take to be legally capable? I'm focusing as it suggests in my title and it's suggested in the stuff that went out before my talk. I'm focusing on decisions about health care and personal care, and that's for a lot of reasons. You'll see in a second that just even focusing on those is super complicated. If we're going to try to unpack what the law looks like in Nova Scotia. So I'm leaving out a really important area of decision making, which is decisions about property and finance. Okay, so I want to be really clear about that. That's not part of my talk, but that's not to say it isn't super important. So I'm going to start with some background principles and values, what is often characterized in the disability community as a paradigm shift that's been kind of up swelling in the last decade or so away from substitute decision making and toward supported decision making, which was the topic I was just referring to. Second, I want to give you a snapshot of the laws relating to decision making capacity in Nova Scotia and particular decisions about health and personal care. And then if I get to it, I have just a few slides because this is really important too in terms of the consequences of a determination of incapacity to make a particular decision. There are some laws in Nova Scotia that are quite particular about what a substitute decision maker must consider when making decisions on behalf of another, so I wanted to give you a taste of that. And my watch words there come back to my theme, which is a substitute decision maker, even crafted as such in Nova Scotia law, should still be animated by the values of support, right? So one should strive to be supportive, responsive, and responsible no matter what the law looks like. Okay, so back to real world stuff. There are a variety of conditions, a variety of circumstances, right? Phenomena internal in some sense to the person as well as external to the person and we know these are interactive dimensions, right, that may impair decision making and I've listed a few that came to my mind here, right? And it's sometimes tough addressing this topic. I started with, right, Jenny's story, a person with down, so we start to think in a particular way about the situation of someone whose legal capacity may be challenged, but of course there's a whole other set of stories and many of you here in the audience will be deeply familiar with the other contexts and stories out of which issues of legal capacity may arise. So I'm just listing these in part to remind all of us about the variety and complexity of ways that these legal issues can arise. But none of those conditions that I've just listed are the same as legal incapacity, all right? So the law is doing something a little different than say a health professional is doing when they make a particular diagnosis. There's something else going on in the law and that's part of what I'm trying to convey to you tonight. It's complex, right? Someone in one of the reactions to my, the title of my talk prior to this week asked, are we going to hear about whether there's a common standard of legal capacity across Canada? So my short answer to that one is no. I mean, you're going to hear that there isn't one. Let's put it that way. So legal capacity, as I say in the first bullet, is defined differently in law across jurisdictions, so in different provinces, but also in relation to different types of decision made in any single jurisdiction. So the law is fragmented. You might think of it as a big broken vase or something if there was some ideal of what it is to be capable of making a decision. That shattered a long time ago as law attempted to craft rules and guidance to us applicable to particular contexts in which those questions had arisen. So it's defined differently. It's complex. There are multiple definitions of legal capacity and I'll give you a taste of how that looks in Nova Scotia in a second. It also reflects political choices. So it's not just about, again, an inherent condition that the law is trying to sort of map onto perfectly. There are political choices being made when the concept of legal capacity is defined at law, so we can think more about that. And these political choices, it's not just about interest groups battling, you know, my interests will be served by this definition, yours by that definition, although there's some of that in politics necessarily, right? But the definitions of legal capacity that we have, while I say there they reflect our core values as a society, that's actually the question. They should. They should reflect our core values as a society in a way that we find acceptable, right? So, and this includes this, you know, just to finish off that bullet, our aspirations for the sorts of relationships that we want to build in our society. So among family members, like the sorts who might be bound up in some guardianship orders and other forms of decision making at law, and among strangers as well. Okay, what's in a decision? Again, my background stuff, but I still, I'm still wrestling to not flatten the complexity of what we're talking about by putting up all my bullets with statements of what the law says or doesn't say. So I've got, you know, okay, what's in a decision? What is a decision? You can say, well, what's a decision to us? I think we would all agree that making decisions for ourselves in some sense for ourselves is very important to us, right? It's really important to be able to decide where I'm going to live, who I'm going to live with, right? It's even kind of important to me often, I'm sitting in a restaurant, I want to be able to decide, right? Whether my eggs are hard boiled or scrambled, that's kind of, there's an importance to that too, the clothes I'm going to wear. Those of us who had conflicts with our parents growing up about what kind of clothes we were going to, that was really important to our identity and to our, to make these decisions. So there's a lot going on in a decision when it comes to its place in our personal value systems, right? But what's in a decision is also a question we can look at in terms of what does it take to make a decision? And that's another right question. Well, and I'll get to that in part in my next slide, but there's emotional components to decisions. One might, and I've got, I don't know if it's Godzilla or what down here, just, you know, I make decisions part sometimes out of anger or out of love, right? I make decisions because I want to help others or I want to establish a relationship with them or maybe I want to set boundaries, right? Sometimes there's a, and I don't know what the heck this is, something Vatican or I don't know what, but there may be a spiritual element to the decisions that we make, right? Sometimes it seems sort of trivial the decisions that we make, but there may be a lot of weighing of pros and cons, right? Costs and benefits. This is someone trying to decide is he going to complete his class assignment or not? You know, there's pros, there's cons, there's a weighing of pros and cons, there's the visualizing of risks and benefits, right? Drawing on our background values and experiences and memories. It's a lot of cognitive and emotional but also relational elements to decision making. And this, you know, here's a group of decision makers conferring and consulting. It's like me and the mechanic what have you. It's not necessarily that solo project that we sometimes think about decision making as we wrestle in this angsty way with what we should do. Just a last, you know, background slide on this point. We shouldn't fall into the trap of I suppose conceiving of the baseline, you know, sort of the norm for decision making as a thoroughly rational enterprise. So neuroscience and cognitive science is much preoccupied these days with exposing the sorts of cognitive biases and errors that typically inform the decisions that we make, right? Whether it be overvaluing ourselves or being over, you know, optimistic about results, right? Here's a guy who's got his lotto ticket and says, I know the last five scratch off tickets didn't win which means this next one must be a winner. There's a whole set, you know, here's folks going into a movie theater. The one says an inconvenient truth. The other says a reassuring lie. Okay, rely on that one. The kind of, you know, confirming of biases that we already have through the questions that we ask or what we pay attention to when we make a decision. So this here says everything you look for and all that you perceive has a way of proving whatever you believe. So all of that has to, I think, be thrown into the mix as we get into this topic of how law constructs decision making capacity which is a baseline, minimal construction in order to enter into the world of one who is authorized to make decisions for oneself. Okay, so last bit's a background but I did say that decision making capacity is defined not in a way that tries to simply, you know, map on to say a neuroscientist's understanding of what it is to make a decision or an ethicist's understanding necessarily but there is certainly in all law and in law's definitions of legal capacity or decision making capacity as well a reflection of fundamental values and a weighing of those values against each other sometimes and against certain limits on those values that we come up against often in law, right? Whether we're legislators or we're judges or we're people just trying to make a decision that accords with the law, right? So two fundamental values that inform decision making capacity laws and our evaluations and applications of them are values that are stated in our Canadian Charter of Rights and Freedoms so our Bill of Rights which is supreme law in this country, sets out a whole, right? A slew of values and rights, fundamental rights guarantees but one of them is the right to liberty I've used the word autonomy there this is the one that just comes more naturally to me but this is the right of self-determination we could have lots of talks about you know what is liberty, freedom from or freedom to but certainly the idea of respecting persons ability to make important life choices for themselves is one of those animating values that has shaped our law and our legal tradition. Equality, another fundamental value which we have to keep our eye on when we look at the ways that legal capacity is defined and applied. Does it have disproportionate burdening impacts on some people and not others, right? We're all equipped with these cognitive biases and common errors that we make but are some people getting caught out for those sorts of biases and errors whether self-aggrandizement or what have you so others are not. Counterweights on those values include as I've got that right protection of the vulnerable so if someone is not equipped to look after their own interests and their own safety then that's of concern to us as a community and that's one of the values on which our laws are also constructed and also there's the use of scarce resources comes into play particularly for instance in some areas of health law including mental health law. Counterweight to those fundamental values at times. Here's a statement from a court because lawyers love statements from courts to kind of back up what we're saying and this is the Supreme Court of Canada in a decision in 2003 citing another court because that's what judges like to do. They also like to quote judges and this is developing this one principle that I value that I started with on my last slide that of autonomy just read it right so it starts in the quote a case called Recauch which is a case that involved an assessment of a woman's capacity she had MS and was living on her own in an apartment her capacity to live independently and make financial decisions and assessor in Ontario went in to her home to make that assessment and made all kinds of what in hindsight look like really egregious and obvious errors in making that assessment and his decision that assessor's decision was overturned or invalidated by the court. The assessor said ask me to help her put on a new bra that she had purchased. This is a woman who had mobility impairments that was you know way her apartment was cluttered it was so messy mobility impairments that she couldn't clean it up. At one point during the interview she ate something out of a bag so this is the statement that the judge in Recauch made in response to the determination that the woman in that case Ms. Cauch was incapable of making decisions in particular about where to live and regarding her finances. The constitutional guarantee of autonomy protects bodily integrity and the right to make decisions of fundamental personal importance even when those decisions appear risky or foolish and that it's that last part that you know we're all kind of motherhood and apple pie or what have you to start but it's when you get the conflict with risk it's like just your foolishness that the hard cases arise. So finally we're on to some legal principles that are getting a little closer to my quarry here the topic of legal capacity. First principle is stemming from that same value that I've been focusing on autonomy or self-determination which is prioritized in our legal tradition. So at law it is presumed that all adults are legally capable of making those decisions of fundamental importance to their lives. So that's a presumption. Decisions about health care and personal care may be of fundamental importance or less importance. A presumption in law can be rebutted. It doesn't mean that it stands forever it can be rebutted but what this means is that the one who wants to challenge that presumption, the status quo as it were has to build a case, has to provide the evidence to show that that presumption should be overturned. So you need evidence to displace this. It's a really important kind of a sacred principle that presumption and one of the problems that can arise in the world of capacity assessment is kind of speeding off past that into the assumption that because a person is older because they have one of those conditions I listed or because of something else they lack legal capacity. So I made this point already but this is also important to realize. I'm not talking about one coherent concept of legal capacity that we have at law. I'm trying to extract principles out of a number of different places that legal capacities articulated in law. So the definitions vary again across jurisdictions, types of decision. There's also variability in terms of who's empowered, who's authorized at law to make a formal assessment of legal capacity. Sometimes it's a tribunal like in Ontario, sometimes it's a court, can be a physician, other health professional. So there's a variety of agents involved in these determinations potentially. Back to these central principles really this should go with the first one, the presumption of legal capacity. Further principles of importance is the recognition that legal capacity, the capacity to make decisions for oneself at law is or should be an assessment that's decision specific. That's very narrowly targeted in terms of what sort of decisions are an issue. And I talked about this, the big divide between personal care decisions including health care and financial decisions. That's one big divide that's often recognized. The ability or lack of ability to make decisions about finances does not determine predetermined the question of whether one's able to make decisions about personal care but it also gets more fine grained than that. So my opinion is that in capacity according to the existing legal tests of making a decision about a particular medical treatment one that's very complex in terms of both the procedure itself and the risks and benefits involved and what I have to take into account in order to grasp that. Or maybe there's some other reason that I'm blocked from legal capacity in relation to that one treatment but I may be perfectly capable of making decisions about some other medical intervention. A tetanus shot right? Something that doesn't fall into the same complexity. It's time sensitive as well. So at law increasingly it's being recognized that you're not either capable or incapable for all time. Many of us will fluctuate in and out of these states. That's an important thing to recognize it's important to recognize as we look at our laws because if our laws tend to rest like a lump with the new status quo once one is determined to be incapable of X or Y or a whole set of things. If it's really really hard to displace that new status then that seems like a problem. That seems to conflict with our interest in respecting autonomy and I think that's a problem that is reflected in some of our laws here. I've said this already. Legal capacity is not equivalent to some medical state or age or some other status. It's also not dependent on the agreement of the person with professional including medical advice. It's often the case that fights about legal capacity arise where there's disagreement. In whatever context law comes to play when people are fighting and that's as true in the medical context as in others. But it's important to recognize that disagreement, different values or different opinion than a professional does not count as legal incapacity. Onto supported decision making as the last of my big background topics is what I started with with the story that I started with. But there's a big political dimension to this concept of supported decision making that I can't really start trailing off into the Nova Scotia context without recognizing. I feel personally obliged, politically obliged and I think as a matter of law we need to pay attention to the way that values, fundamental values are shifting in Nova Scotia and internationally. That's an interactive process. So what's the UN Convention on the Rights of Persons with Disabilities got to do with my topic here where we're trying to think of how the law in Nova Scotia may affect individuals in Nova Scotia. I'm hoping that there is a relationship. So this is a, as I say, UN Convention that Canada ratified a couple of years ago. I say there it had a wide participatory base in its drafting process. It was an unprecedented sort of democratic surge at the UN in the sense that there were, oops, scores and scores and scores of representatives from disability organizations around the world at the sessions in which the convention was drafted. People representing these organizations including folks representing the psychiatric rights community as well as persons with developmental disabilities were involved in drafting the early drafts of this and in the conversations that ensued up until the finalizing of the document. And that participation shows the language and the spirit of the document. So what does the document do? It speaks to a whole interactive set of civil and political rights, the right to vote, the right to freedom of association. These are quite familiar to our liberal tradition. It speaks to an interaction or kind of interlocking relationship of those rights and what are commonly referred to as social and economic rights. So these are rights that include education, a right to health, a right to meaningful work to an adequate standard of living. Wow, what an aspirational document and this is all positioned around persons with disabilities. So those are the rights holders recognized in this document and the document puts itself forward as simply attempting to apply in a meaningful way to persons with disabilities rights that others enjoy already. These are stated as universal rights. What's the point of this document? What's the relevance? It's an international convention. What's that about? Can I just pick up this piece of paper and go to the local school board and say, here's the convention. You have to give me this. It's not that simple. In fact, there isn't even an international forum given Canada's vote of participating in this convention. There's not even an international forum that we can go to and have a right that we see as being breached under this document, remedied by Canada. But we can still use it and these are the two most important ways I think for us of thinking about the use of the document. It's relevant to how we read and apply our own laws here in Nova Scotia and in Canada. So there's law in Canada about the status of international law and it's relevant to the way judges and administrators like your school board officials are to interpret and apply the laws that we have in Canada and provincially. It's also relevant politically as a means for pressing for reforms. So what is it about the convention that I'm interested in? It's article 12. Equal recognition before the law is the subheading to that article and there's three clauses to it and I'll just spell them out for you. The first is the affirmation by the states who signed on to the convention that persons with disabilities have a right to recognition as persons before the law. Okay, well that doesn't sound like it's earth shattering. Secondly shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. What that always means is hotly contested right now. But it's an aspiration toward the model of supported decision making. What that model is exactly its implications for domestic law is another question. It's grounded in the value of equality. So legal capacity on an equal basis with others and here's the direct link to support. The states party shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. So if you think of that judge deciding that first decision that I gave you it didn't say in that legislation in the legislation, the guardianship legislation being applied in Virginia there was nothing that mandated supportive decision making in that language but those lawyers and advocates that came before the judge used this language drawing explicitly on the convention in order to encourage a modification of the guardianship order that recognized this principle. Canada has backed off a little bit, ratified the convention but in relation to Article 12 they wanted to be really clear that their signing on did not mean they were committing to trashing all of our existing guardianship and substitute decision making laws. And I'm going to do the sort of contrast between substitute decision making and supported decision making in a second. Perhaps these can coexist in harmonized fashion, perhaps not. There's broad disagreement on this but Canada absolutely takes the stance that the existing models of substitute decision making we have do not conflict with the convention. Substitute decision making, supported decision making, this is this language of a paradigm shift that disability advocates around the world have been using with reference to Article 12 which I just showed you and I'm just trying to kind of thematize the sorts of aspirations that are expressed in this idea of a paradigm shift. So if substitute decision making connotes the individual's lack of some internal piece some internal capacity or room I guess it would be to make his or her own decisions. Supported decision making looks at all decision making as taking place within a framework of supports. So we're talking about for everybody. Your education your emotional and social and economic supports all of these combine to make you capable of decision making. It's a spectrum of how much supports and what types of supports are required. Substitute decision making involves the transfer of decision making authority from one person to another. Supported decision making is more about tailoring supports to the individual's needs. If substitute decision making connotes suspicion, surveillance ultimately coercion. Supported decision making connotes respect, assistance, offering of a range of meaningful options. Wow it's really sort of a really dark side and bright side. Maybe it's not so right necessarily absolutely polarized as this. Maybe it is more of a spectrum but this is the discourse that you should be familiar with and finally if substitute decision making positions the individual as a dependent person as passive. Someone whose life is happening to them as others decide how it should go. That person is in a sense absent if you think about the conversation in the doctor's office around even you know whether we're giving the tetanus shot the conversations going on between the substitute decision maker whether it be mom or dad or your child adult child and the doctor or caregiver and the one receiving the treatment is just out of the picture. Whereas supported decision making seeks to set up a framework of supports in order to involve the person in the direction of their life. Just a quote from the World Network of Users and Survivors of Psychiatry one of the activist groups involved in the drafting of the convention. Here's their description of it instead of restricting the autonomy of those who need extra support and comfortably participate in all aspects of life the CRPD requires states to provide access to such support and respect autonomy. So you get the picture now political not metaphysical this is just my picture of various other folks who participated in these conversations at the UN so this idea that legal capacity is a political construct it responds to this courage of political movement among people who have been lumped in with the psychiatrist or those with intellectual disabilities and their families who also participated in the drafting of the of the convention so it's a political process that's moving us toward this new understanding of legal capacity. We're not trying to approximate some metaphysical sort of ideal of decision making capacity and my last word on that all of these arguments kind of fit into the social or human rights model of disability which is sometimes contrasted with a strict medical model of disability so the sorts of questions that you ask about disability including legal capacity are questions like these so how does the environment and the mental condition of a person interact to produce disability or legal capacity in this case how can how might conditions under which capacity is being assessed how might those conditions be impairing the person's ability to demonstrate capacity and how can those conditions be altered I said that was the last but I have to give you something positive before we go on to our picture of Nova Scotia law what would it mean to support legal capacity I would like to just lay out some broad sort of some scaffolding to help us think about that so there's no one size fits all answer to what it would mean to support decision making it's individual specific and context specific but certainly the idea of providing a range of meaningful options is one way of supporting decision making capacity opposed to here's the choice is one thing assisting the individual in understanding those options exploring them thinking about the consequences and that could be a family member appear it could be someone designated by the state sometimes the help comes in relation or is necessary in relation to the expression or communication of a choice sometimes it's a matter of trying to set the tone for deliberation and reflection and that could involve things like crisis intervention building relationships of trust and there's a whole set of wider supports that go to supporting legal capacity and I've just listed a bunch here which go back to the social and economic rights listed in the convention there are a few legal models not in Nova Scotia that are attempting to integrate the idea or ideal of supported decision making into their laws and one that was drawn on in the drafting of the convention and in those conversations a fair bit was BC's representation agreement act and I don't think anybody except maybe some BC folks are going to say this is the perfect model I think that there are some areas one could critique within that model and I'm sure it's giving rise to some problems but it's also a step forward from the prior type of model that it's replacing so that legislation explicitly says that a determination of incapacity is not to be based on the person's way of communicating with others so it makes that explicit you might think that's common sense but it's not necessarily it also allows an individual and this law was crafted in intensive consultation with people with developmental disabilities and family members and that's something to keep in mind so with this second bullet an individual can appoint a person they trust to assist them with decisions in specific areas so either to assist them or to make those decisions it leaves these options of supported assistance in making decisions or substitute decisions so that's a type of appointment that an individual adult can make the capacity to make that appointment is not based on something we're going to see in a second as a kind of typical cognitive ability model of understanding and appreciating the matters issue we'll see this in a second so appreciating the consequences of the decision understanding all the relevant information it's a different threshold and it's based on the person's expression of their preferences and their trust in that individual so it's a different you might call it a lower more emotionally or relationally based threshold for making a representation agreement for appointing a delegate who's going to assist you with decisions or make them on your behalf a caveat there though is that that person who you're appointing because you trust them is not given the authority to authorize actions against your will where you're willfully resisting those and finally a representative under this act so one who's been appointed is mandated to respect the current or contemporaneous wishes of the individual if that's reasonable to do so this is going to you'll see the difference between this and our substitute decision making laws in a second and the main difference is that in Nova Scotia and in other provinces the first place one looks when one's making a substitute decision is to prior capable wishes if a person as you know at some prior time has the capacity to make the decision indicated their wishes on a particular issue then that's going to govern and otherwise you decide in accordance with what you think the person would decide based on their values and your knowledge but in BC again this is speaking to the situation of say persons with developmental disabilities who may not have some prior capable trumping thing and the idea is that you as the decision maker are to respect the current wishes of that person if it's reasonable to do so and there's of course some wiggle room on that reasonableness standard. Second model that's sort of touted as advancing supported decision making is one out of Sweden the idea of a personal ombuds person so this is a model that was developed in particular in response to persons with psychosocial disabilities called mental health psychiatric often isolated not having family who they might be appointing to write work on their behalf and support them so folks who were marginalized or isolated in the community and so this is a model where the state appoints somebody and that's the personal ombuds person to meet with the individual and to advocate for their interests not just advocate for their interests but I guess deliberate with them talk to them help build decision making capacity through reflection through having a sounding board and then advocate for the person's interests and it's notable there that this ombuds person acts only at the client's request so it's not quite the same as say you know a sort of community treatment where someone's going in and forcing something on the individual let's look at Nova Scotia I said that the law relating to legal capacity decision making capacity at law is a little like a you know a vase that shattered and it's in all these various pieces and you're trying to kind of make sense of how they fit together and they don't actually always fit together perfectly and Nova Scotia is an example of that so I've just listed the names of a set of statutes pieces of law that have been passed provincially in our province and that speak to decision making capacity at law in different ways and I've bolded the ones that relate to decisions about personal care or health care the last one there the powers of attorney act relates to finances and property decisions only and I'm kind of putting that off the table there's also a whole set of statements that judges have made and precedents in law women law right judge made law that speak to particular types of legal capacity with the capacity to marry or testamentary capacity these are it's a it's a rich and complicated world but more and more the laws approach to decision making capacity is consolidating around the idea of understanding the matters relevant to the decision and appreciating right the implications of those matters for oneself when the risk and benefits this is forecasting where we're going to go in a second some of our laws explicitly state those two prongs of legal capacity but it's not consistent across all of all of our laws and none of our laws this is a point I want to make near the end none of our laws speak to this aspiration of support right speak to the value or the particular what sort of mechanism of supported decision making and I think that's something that should change I'm not going to dwell on my charts I could stand her all day and tie I've got two charts and this is the kind of thing you might flip back to either if you're just a law nerd or if you're someone that has a particular interest in one or more of these laws but this is again to give you the broken up idea it's complicated if it sounds simple to you when I talk about legal capacity then you should second guess me so these are three of the acts that I had listed there all I've done in the different columns is apart from stating the statute's name I list the nature of the in capacity that's addressed or defined in that act and I'm speaking on its own terms right just quoting the act so the incompetent persons act right speaks to what the phenomenon of incapacity from infirmity of mind of managing one's own affairs I'm going to say in a second that's a bit murky in terms of how do you operationalize that but that's the standard you know a court is the one that makes this assessment the final determination although they rely on the evidence put to put to them by physicians what happens if capacity shown well a guardian is appointed by the court right so that's SDM stands for substitute decision maker in that fourth column and what kind of authority does that substitute decision maker have well under the incompetent persons act that decision maker has authority over the estate and the person of the adult represented so what does that that sounds pretty broad too well that's going to be my point but we've got a whole set of other acts that I've run through I'm never going to get through it all because I just so love all this stuff I get deep inside it but I'll give you a taste of some of these other acts as well and if on your own time you want to come back and admire my chart you can you can do that the three other statutes that relate to health and personal care decisions the Nova Scotia that I pay sorry two other powers of attorney act is the one I'm putting off the table because it relates to property and finances so the other two are the involuntary psychiatric treatment act it speaks to treatment incapacity to make treatment decisions it defines that and when that incapacity is established it has a huge impact for for an individual's life and circumstances adult protection act speaks to another form of incapacity that we'll look at in a second okay so just to start with the incompetent persons act I guess I'm starting with our dinosaur in a sense this is a law that has remained essentially unchanged a little bit of tweaking with the words right took out lunatic and what was the other word there's another word in this act that people found offensive so the words were changed but it's essentially the same as it was in the late 1700s when we inherited this law from England and we've tried to change it I'll show you in a second we had a big law reform commission project around this in the 90s and they made all these great recommendations to big consultations nothing happened except a little bit of tweaking around the words the terms used so I'm not going to dwell on this act except to say that right I'm just giving you the definition I already added to you of the sort of incapacity that's in play in this act a person not an infant so an adult incapable from infirmity of mind of managing the person's own affairs that's what the court has to work with and what the applicants have to work with when say a family member like in the case that I started with or some other concerned person comes forward makes an application to the court and says I should be granted decision making on behalf of this person because they need looking out for sorry I just bumped that this is the operative standard that's in play the test as it were that doctors will give evidence right in relation to maybe they'll be using an IQ test maybe they'll be using the mini mental state they'll be drawing on what resources they have as physicians in order to try and make sense of this legal standard as if the standards met there's an award to another right to the one who applied of care and custody of that person and management of their estate what's the problem well it's a pretty big, big standard it's already implicit in the way I've presented it so both the standard of legal incapacity as it stated it's a bit of a fuzzy edged right phenomenon and also the powers that the guardian has under this act power over the person and the estate it conflicts with the principles that I started with when I was giving you kind of modern principles on legal capacity which tend toward specificity and containing and limiting the area in which the individual's decision making authority is overridden or usurped a particular treatment or a particular right so there's a problem with that act and the law reform commission in 1995 released a report that said although a whole bunch of critiques I was just looking at them they still look kind of right today doesn't reflect their current social needs or values you know the act should require the court to decision sorry to consider the specific types of decisions that are of concern the adults way of communicating I'm just quoting the law reform report you know decades ago what available support and resources there are the wishes of the adult including those potentially having been expressed in advanced healthcare directive the act should explicitly require the least restrictive intervention just pressing forward all of those concerns and you know again quoting it's like what's new is old the court shouldn't appoint a guardian unless an alternative such as providing support and help have been tried or carefully considered adult protection act another act that we've struggled with over the years in Nova Scotia with processes of revisiting it and critiquing it and then we're not sure what else to do in order to better respect individuals liberty right and equality while serving those counterweighing values of action of the vulnerable how do you strike the balance in that act and there have been recent reforms to the act that mostly leave aside because luckily they relate to financial matters right so the authority of the state to intervene in an adults life where they've been subject to financial abuse is new in this statute new as of just a few months ago but here's the definition I'll just put to you again big sort of understanding lumpy understanding of legal capacity or incapacity here so an adult in need of protection is defined in the act as an adult who's the subject of abuse or neglect or self neglect I'm summarizing the way that the act puts this forward further to be an adult in need of protection you have to be established to be incapable of protecting or caring for yourself and hear a slightly new language by reason of permanent physical incapacity or permanent mental incapacity right and you refuse or are not able to provide for your protection care so permanent mental incapacity again you're the either the judge or you're someone giving evidence what evidence are you giving this big idea permanent mental incapacity the adult protection division has actually set out a whole gosh what is it 500 pages of policy for their adult protection workers and you can find this online if you're interested it's wonderful publicly available in that sense on how to do capacity assessments how to assess whether an adult is in need of protection and these issues of incapacity are also quite carefully looked at in the policy not in law so if the minister is satisfied that those criteria are met then they'll assist the adult in obtaining services but there's an alternative so the alternative is in section 9 3 of the act where the minister can apply to the court go to court now for a declaration not just that the adult is in need of protection but that they don't have the mental capacity to decide whether to accept the assistance that the government is offering so that's where legal capacity to decide about personal care and healthcare comes into play in this act so the court looks at these broad definitions and on a best interest basis can issue an order and the main type of order that's issued under adult protection is that the person be moved out of their home into a nursing home and I've been involved in work with Joan Harbison over the social work she's now an artist professor who's looked at the adult protection regimes here in Nova Scotia and other maritime provinces for a while and our critique is one that there's other orders that can be made but I'm going to just flip past them now our critique is that the adult protection regime as it stated and as it's implemented in kind of the context of what we continually see as scarce resources it tends to emphasize last resort interventions wait wait wait wait till that last moment where the person is in such dire circumstances living in their own feces and unable practically to speak that's when you intervene and you scoop the person up and you take them to a nursing home so I'm putting it dramatically but this is in a right large sense of my understanding of the act rather than earlier on backing it way way up offering meaningful supports including home care earlier on so that's the supported model is not to my mind at the center of the adult protection regime either how about the involuntary psychiatric treatment act well that's where I've done in the psychiatric context is where I've done more of my own work in research and I am really interested in the question of how supports can be meaningfully offered and deliberated on in relation to persons who end up in psychosocial psychiatric crisis that's one of the hard for me it's one of those hard cases, hard questions no easy answers often no happy endings but I think we can do a lot better than we do and our involuntary psychiatric treatment act or IPTA is an act that emphasizes interventions right hard hitting last resort again like the adult protection act when things are going really bad interventions in a person's life it's just what else can we do look what's happening here we can't deal with this person rather than backing up and that's what I like to do and I'm an academic I'm allowed to do that I roll back the tape you know in the legal cases I look at and in others you can think of Ann Derrick's Howard Hyde inquiry she was backing up the tape right past that point where Howard Hyde ended up in the circumstance where he was in mental health crisis and was tasered and he ended up dying what was what can we find in his story to indicate moments when he might have been meaningfully supported so IPTA has a set of criteria for involuntary psychiatric hospitalization one of them is that the person the last bit there does not have the capacity to make admission and treatment decisions that's why it's on my on my list that's a criterion it's a necessary condition of involuntary psychiatric hospitalization what does that mean well IPTA is an act that unlike the others that we've just seen defines it a little more specifically I like that you know I like to know what I'm doing with at least I might critique it then but at least it's spelled out as is the case with our hospital's act you'll see in a second so what does all this mean capacity to make treatment decisions well this law spells it out in terms of those two prongs that I was talking about understanding the relevant information and appreciating the relevance of that information for one's own case that's essentially what this big long list is all about defines you know what information is relevant to a treatment decision well you should know the nature of the condition for which the treatment's proposed the nature and purpose of the specific treatment specific right this is also it's that limited kind of the specific treatment that's an issue the risks and benefits in undergoing that treatment or not undergoing it so that's the understanding and appreciation part kind of writ large that's the difference between those two in a sec just a little more and finally whether the the person mental disorder affects their ability to fully appreciate the consequences of making that treatment decision that word fully that's there you know sometimes I think about that and I think of many of the decisions I make whether it be about fixing my car or having medical treatment do I fully understand and appreciate all that stuff that's pretty darn hard doctors don't even try right to explain it to us because we all know that it's really hard and yet that's the test that's the test that right you've got to pass that test in that 72 hour assessment period when you're in mental health crisis and you're at the at the threshold of involuntary committal that's a weird circumstance to be in for everybody involved but I am interested in how you can make sense of supporting decision making even there these are just questions that I ask is it discriminatory to require full understanding and appreciation of all that stuff in this involuntary psychiatric committal context when that word full is the one thing that's missing in the statement of the test for legal capacity that applies everywhere else to everyone else it's a higher expectation at that moment of mental health crisis potential committal than it is anywhere else anyway consequences are hospitalization maybe a community treatment order I don't have time to get into all this assignment of a substitute decision maker right to make your treatment decisions for you under the terms of the act it's going to be a close family member if you don't have one it's the public trustee hospital's at okay let me finish up because I've got a little more of the same now but I'm getting a little more into some acts that get more specific and kind of more interesting to me although the others I'm more upset about because they're such dinosaurs particular in cognitive persons act the hospital's act it's a little like IPTA that we just saw but this relates to decisions about treatment in hospital aside from the involuntary psychiatric situation so everybody else your cancer patients your heart patients everybody who's in hospital this is the one that applies the condition makes the assessment again what's the consequence well if you don't meet the task for legal capacity to make the treatment decision an issue then a substitute decision maker selected and has to decide in accordance with some statutory standards now this is going to overwhelm you again but it's basically what you just saw with IPTA except it lacks that word full or fully so does the patient understand and appreciate the condition the risks and benefits of undergoing the treatment or not and then there's that business about appreciation is the same language as IPTA does your mental condition interfere with your ability to appreciate the consequences of making that decision sometimes we translate this in colloquial usage which I find kind of maddening because the colloquial usage is all over the map but we translate this into the concept of insight do you have insight into your condition legal case in the same case I had up before Supreme Court of Canada kind of unpacked understanding and appreciation a little bit for us understanding is cognitive the ability to process retain tautological you know understand you know what we mean understand the relevant information appreciation ability to apply it to yourself so foreseeable risks or benefits so the one of the examples that Paul Appelbaum gives he's one of the big writers about assessing legal capacity in the United States and he writes for medical professionals in particular he tells the story often to make sense of appreciation of a woman who was in hospital and had gangrenous so right the foot's looking really bad and it's changing color and the medical staff need to amputate it that's their proposal or else she's going to lose her entire leg and possibly die and she can report back what this condition is in the abstract she can describe it as well as you like remember all that stuff but she refuses to recognize that her foot is gangrenous and she says it's just dirty and she keeps trying to wash it so that's an example that's given a failure to appreciate the kind of thing that can go on right for so many complicated reasons in different areas of life but this is one kind of simple example where she would have not met that test for legal capacity okay now you might come back and say gee what could we have done to read could we have got a family member maybe she's scared as all hell of losing her foot and her leg and she's denied denied denied as many of us do whether it's cancer or you may know family members it's just how did you not get that thing looked after these are common human frailties can we address them or do we just set off the incapacity alarm bell I'm not going to run out of time so I just want to make sure clear that out of that same case Starson and Swayze they articulated a couple principles and one is this this goes back to supported decision making so where a person is advancing is showing a failure to understand or appreciate that information don't necessarily assume that they're unable look to how good was my imparting of the information here there's lots of studies that show re-educating older adults and others over you know separate encounters way improves their scores on this stuff so have I imparted it in a way the person can understand are they sedated I've seen cases Ontario Consent Capacity Board where the person was under sedation where they were undergoing their capacity test it's so they're a pro forma but those are obvious examples but there are others emotional and other circumstances that may interfere also ensure that it's not disagreement differences of values or opinions that's driving the assessment and this is I just want to give you this other example because it's a Nova Scotia one re-crew this is a case where 25 year old guy was in a correctional facility and he was diagnosed with testicular cancer actually had one testicle removed at birth so he's got to know this test he didn't know this though at the time that his capacity was assessed his capacity to make treatment decisions was assessed he was being shipped off to the hospital to get all this stuff looked to had a capacity assessment but there hadn't been an adequate informing right of the condition that was an issue in the treatment proposed at the time of the assessment that's a bad assessment right if you don't inform and I mean we had great people involved in this case but it shows how hard on the spot it can be to do this stuff right and secondly there was a second assessment done after he had been informed and he was freaking out he was chained to a hospital bed is this right for flight risk he did have a delusional disorder of some kind in the background so some of that's driving right this weird case but he was freaking out and the judge said hold on you have to take into account that the guy was really emotional here and that's going to interfere with his ability to meet the test so kind of same sort of message whoops that's really a weird I don't know how that happened but legal safeguards that's just summarizing some of the stuff that I've been saying about how you can try and work in support to existing laws around legal incapacity you know so inform people not just about the intervention that's an issue that's this informed down here but also for these legal capacity tests are an issue inform them of the nature and purpose of the assessment this is a requirement in Ontario law it's been stated in an Ontario case and I think it makes good legal sense here I mean think about it if you have a medical professional or other approaching you let's have a conversation about your condition you maybe have a sleep and not care and say you should know what an impact this conversation may have on your right to make decisions for yourself so that's important and if you're undergoing a capacity assessment right maybe you don't know and then you realize that that's a point that you could challenge on all of these points either you or you on behalf of a loved one right address those the circumstances that may interfere with your capacity decide should be addressed right inform inform reinforce probe so this is my right this is my slide for professionals often so if they get a response that's just not making sense you know I don't want this treatment I've got to feed my cat something like you know I've got to go home and probe figure out what's going on what's the emotional or other what's the value that's driving a response that might seem to you completely irrational a person's insistence they want to stay in their own home right despite clear and obvious risk to them of staying in their own home and finally you can consult corollary sources I'm going to have to I was going to tell you a little bit about those other acts that I have but for one thing my computer seems totally frozen oh there it is you know but I'm going to have to give you a little bit of time to ask me some questions if you'll bear with me I'm just so that you have a sense of like the array of things you might want to talk about or ask about I was going to you know prepare to talk a little bit about who is the substitute decision maker if you don't meet the test of legal capacity under the hospitals act it's giving you some laws there and I was also going to talk a little bit and you can come back to the slides you can think about a really important piece of legislation in Nova Scotia called the personal directives act which both recognizes the legal force of advanced directives relating to personal care in this province and the power that we all have to make advanced directives indicating our wishes or our values regarding both healthcare and personal care is an important one to think about and talk about with each other so it's not something I actually want to just skip over it does go to the value of autonomy that is I think should be at the core of our thinking about this right this is just a list of what personal care involves under the act the test for capacity very similar the understanding and appreciation prongs this act also speaks to people who have no advanced directive right their situation outside hospital where they may be incapable of making decisions in three areas healthcare placement in a continuing care home and home care services it's really an important area especially that second one placement in a continuing care home so you're outside hospital you're someone who may be having trouble at home who's going to make this assessment and how's it going to be made you want to stay home and the neighbors are worried your daughter is worried it's obviously a really important area to look at last year I was called up by the some emergency rounds folks at one of our hospitals because they were really concerned they had been asked and they were being asked continually to assess what were presented as frail elderly brought into the emergency ward maybe sitting there overnight under the fluorescent lights right assess them for their capacity to decide to live independently so there's the docs throwing up their hands saying how can I even start I have no idea of this person's context of living I have no I haven't been trained in this and those docs were being asked to sign off on the form that would place that person in a continuing care home that's kind of a worst case type description of what's happening under the personal care act but there are ways that I think we could support those types of decisions as well in this slide I'll just leave you with this in terms of you know the types of questions that can be asked in order to make sense of these assessments but also right the same sorts of values that I just approaches that I just spoke to with relation to treatment decisions map on to these sorts of decisions as well and so to the same so to the points about supported decision making both in the very personal right the relational interaction of the one assessing and the one being assessed how can that one assessing support or bring in others who can support but I don't want to forget that wider context of social and economic supports and opportunities these include training for those professionals who are asked to do these assessments right protocols right to ensure that these assessments are done barely as well as that whole sort of wider aspirational idea of people in the first place meaningful support so they don't get into that last resort pickle all right I'm going to stop there because it better stop somewhere even though I could go on anyone want to talk about any of this stuff yeah please yeah yeah yeah I'm sorry the fact that one has been diagnosed with a particular mental illness or condition kind of like I said earlier on it's not determinative it's not a one to one no matter what the illness is although right folks with schizophrenia or bipolar disorder often find themselves more right more frequently in situations in which their treatment decision making capacity is called into question and sometimes we see this happening you know this sort of the story of someone who's managed on medications then goes off the medication but I want to avoid a story the very frequent story that we that we tell about compliance or non-compliance with medication and then mapping that one to one onto capacity and incapacity you're capable if you're complying you're incapable if you're not complying and I'll just point you again to something I mentioned earlier Justice and Derek's report on the hide inquiry so she did an inquiry into the death of Howard Hyde and one of the things that she looked at was Howard Hyde's frequent going off his meds right and she asked the question which is this right keep going why why was he going off his meds and he had a bad time with some of the medigate there are rational right at least maybe rational is the wrong word but you can sympathize humanly with the decision and it's not always the case that you need ex-medication to maintain capacity so I want to avoid that story but at the same time note that sure there's a there's a link between some mental disorders and the frequency with which one's incapacity is challenged I'm wondering how freedom of religion interacts with substituted decision makers both on the grand scale with transplants and transfusions and even on a lower scale with personal treatments such as cutting hair cutting facial hair when that imposes on the freedom of religion of any person who is having decisions yeah I think well that's a great question one of our big legal precedence came out of Ontario was one that related to a Jehovah's Witness who had a card that she had written out I think some years before saying I think it was simply no blood and she had had an accident she was unconscious and the question was could they transfuse or not remember rightly they transfused but then the doctor got hit with having essentially committed a battery he acted against the refusal as indicated in her directive there as based in her religious beliefs right he'd acted against that now you could unpack that she didn't need to rely on freedom of religion in order to make her case it was autonomy and all those principles we just saw but you know my right to determine what's done with my body whether it's for a purely irrational reason or a religious you know reason but I think what you're getting at is the potential for the alarm bells to start going off maybe you are on the health professionals side where the health professional is not quite getting to that religious basis and sees it as simply irrational you know don't cut my hair don't and there's a long history of kind of trying to separate out what is the difference between a religious belief and a delusion and a delusional system and you know right and you try and link it up to well you know it's got a community of beliefs and you've got a culture of beliefs and all this sort of right as opposed to everything but there's an interesting literature on that very question substitute decision maker whether it's like a family or something like that if they have any kind of guidelines or if there's any kind of recourse against a decision maker who ignores the wishes of you know it's just you're talking straight to the doctor and the person whose body is a professional and sometimes whether that substitute can have a recourse or deliver people if the substitute disobeys the religious wishes of the person who's not conscious of it is a recourse against the substitute decision maker it's a really important question I also want to say though I forgot to say that there is also a whole literature you know it's a whole literature and a whole versioning important interest in cultural competency among health professionals in interacting with their clients it adds a whole new layer and dimension to these assessments so your second question though as to mechanisms for challenging a substitute decision maker in Nova Scotia one can go to the court in a second if I'm unconscious if I'm otherwise in difficulty how do I get the application to the court going in order to challenge my substitute decision maker there's a few complexities around your question even the go to the way the courts oversight powers are phrased in our hospitals act just what kind of oversight of the substitute decision maker is to be made but I was going to at one point mention the rules essentially that are set out for substitute decision makers this is what you would look to you point to as the person who's had a decision made on your behalf and you're saying no no no that's not it which is often the case talking about these vague literatures whether it be differences in religious opinion or other reasons there is a literature that shows family members often depart from even the clear prior advance directives and wishes of their loved ones whether around end of life or other matters what's with that it's a complicated set of affairs but in terms of law representation right that a substitute decision maker once in capacity shown and they're duly appointed should decide in accordance with the patient's prior capable wishes so their prior express wishes that could be in the form of an advance directive written out or it could be just something that was orally transmitted while the person was capable that's the first thing deciding importance with that so if your person made their wishes known that's what the substitute's supposed to decide in light of there's a little bit of complication of that that goes to whether those wishes are applicable in the circumstances I'll skip over that but it's really interesting but if you don't have a prior express wish then the next default is that the substitute is to decide in accordance with what he or she believes the wishes of the patient would be based on what the substitute knows of the values and beliefs of the patient and for many other right instructions so that goes to your that's what the law says the person should do and then the question is well how can you challenge it under this act it's a mechanism where court can review it courts are not always easy to access just an access to justice point of view it's also under the personal director's act a court that's authorized to best oversee both assessments of incapacity and the decisions made by substitutes how does that person who's in the continuing care home get that application going is my question and one of my I guess suggestions for law reform would go to making those processes more accessible whether through creating an administrative tribunal that's designed to be effective and accessible or an expedited court process but also through processes like these but other forms of communication to the public about what people's rights are there was someone over there you know it's too so far it's such an abstract case that you've presented it's got no context so so far I'd say let's talk about this further and then I'd want to get into the question of whether there are alternatives that are more I guess less restrictive of that individual's liberty and autonomy and developing but let's hear more about the situation capacities to make decisions for themselves and then if they were to say I've got these safety concerns I've got right these concerns are deep then I would encourage them when making that application to kind of join with this autonomy respecting movement I suppose and even in the context of that application only we can ask for what is necessary to right to the best interests of that individual you know so contain as much as possible the sorts of decision making powers being asked for and leave the rest as opposed so let's ask judges to be clear in their orders under the act of what the areas of guardianship are and are not yes it is this is the kind of situation where an academic steps back and says you might want to talk to a lawyer so that you've got right so that I don't want to be going astray and talking off the top of my head way outside the specific context and circumstances and needs both the child adult child now and the parents I've given you my arguments to say that I think our laws could be reformed to open up more options for people and to allow us to see the opportunities for supporting decision making not just the law right law reform can't do that work on its own you need a commitment in housing policies right distributed justice right policies where disability is not regarded as an afterthought right once the money's run out there is policy that looks at the capacity or there is law that looks at the capacity in such detail like this why is it important that there is a line at 18 a line to decide who's an adult and who's a minor and who's applying the same general capacity well the law on mature minors is also not consistent across the country so I use this word mature minors so it's not always the case that a strict line is drawn and you're incapable before this age and capable after you know after it so the mature minor test presumption so with adults we presume that you're capable and we operate on that assumption presumption unless it's rebutted with minors it's the opposite we're going to presume that your autonomy capacities are developing right in your capacity to make decisions for yourself is developing but there is case law that directs the assessment of minors to see if they do meet those tests and it's the teenage years in particular and we have some case law around really difficult decisions whether it be blood transfusion you know Jehovah's Witnesses or other less life changing families it's a good question but it's another whole thing to unpack this is a bit outside of the legal context but I know you've written on social justice as well what I said do you think declarations of the capacity are in January or are racial lines are imposed more frequently on the poor who don't have access to these overdressed or are women? Yeah it's a really important question and one that needs to be looked at more and it has been looked at in the past and there are sometimes fights about the data but one of my earliest ways of engaging with this topic was through the writing of an American feminist who was looking at women's experience in particular under guardianship assessments and Barbara Sucker is a biologist here in Canada who did similar work at that time so Barbara for instance was writing about financial capacity assessments in the context of older women who may not have been involved in running the household affairs and so this kind of supported model and also recognizing that some people need supports maybe relying on others but the move to simply usurping decision making taking away all decision making authority from say that woman who for various gendered reasons has been outside that area of activity that's a problem that is a social justice problem and equality has a different dimension to it than simply the autonomy dimension racialized there's work in the states around black men in particular being subject to involuntary hospitalization with more frequency and with that comes in capacity determination we've got some great work out of Quebec on cultural competency and capacity assessments that starts to sort of show how much how much difficulty there is in bridging deep cultural gaps so cultural difference here whether it be religious beliefs or other beliefs around you know what the doc might diagnose one way and the person understands another how do you bridge these deep differences cultural differences and so there is always an equality dimension to these questions that you need to be I guess conscious of in the individual circumstance but necessarily systemically as well if I understand times where the competencies that have assessed and personally deemed incompetent both side of the problem in terms of hospitalization so I wonder who is there to that somebody knows pretty much such a dark advocate and protect the interests of that individual other than the family or the well-attentioned profession I remember hearing about a mental health advocate program that I don't know where that's at right now in the legislation or that's really just up to in the voluntary psychiatric hospitalization context there are not forgetting the terms of mental health advocates they're not giving legal advice but they're trying to facilitate you know your access to that advice if you want it I think that a whole lot better job could be done both in that context which is a smaller sort of rare vibe a very intense and important context and in the broader context whether within hospital where some of this I mean it's happening as a conversation among the treatment team it's often not just that doc who may be coming and seeing a person for you know five minutes a day or so it's you know the conversation and this is how professionals are educated to do these assessments is among the nurses and the others who've met with the person maybe with a family member so maybe in that crew there's someone advocating saying hold on maybe we should actually address the person and tell them we're doing this assessment but not necessarily it's not as clearly an ombuds type person no I mean we have the ombuds person but that's not their specific role some people are going and I think I've got to party down thank you for coming this evening and thank Sheila for her remarks and I'm sure she's willing to stick around for another couple of minutes for those of you that still have a burning question or two left thank you