 Hi there, I'm Sheila Walton, Associate Director of the Health Law Institute, and today we're very fortunate to have with us our speaker, Vera Niki Vaughn. Madame Niki Vaughn is a member of the Parti Quai Pois, elected to the National Assembly in Quebec. She's represented the region of Joliette since 2008, having been twice re-elected in 2012 when the PQ won in the minority government, and again in 2014 when the party returned to opposition status. She has a degree in civil and common law from McGill University, and two master's degrees in social policy and planning from the London School of Economics. Before taking up her role in the Legislative Assembly, Madame Niki Vaughn played a variety of roles in politics, as well as spending time in academia and working as a lawyer with the Quebec Ministry of Justice. Madame Niki Vaughn has held a number of important positions while a member of the National Assembly. Prior to 2012, she was official opposition critic for justice, youth protection, and international adoption. In addition, in central to her topic today, she served as the vice chair for the Select Committee on Dying with Dignity from December 2009 to March 2012. So this was the committee that produced the Comprehensive Report laying the foundations for Quebec's new law on end-of-life care. After the PQ came to power in 2012, Madame Niki Vaughn played a number of key roles, serving as minister of social services and youth protection, as well as being designated as the minister responsible for the Dying with Dignity file. Following the 2014 election and continuing to the present, she has been the vice chair of the Committee on Health and Social Services and is official opposition critic for culture and communications, higher education, and end-of-life care. So from all this, it should be clear that Madame Niki Vaughn has been central to the long and complex process leading to the passage of Quebec's after-respecting end-of-life care passed in June of 2014, a law that comes into force at the end of this year. She was co-sponsor of the bill, along with the city minister of health and social services, Gaitan Bara. Again, we're so fortunate to have Madame Niki Vaughn with us today to share her insider's view of the intense process of public deliberation through which Quebec has crafted its response to the contested question of how we should deliver care in the end-of-life care. Hello everybody. Je suis très heureuse d'être parmi vous aujourd'hui ici à Alifax, and for those worrying, I can say in English that I'm very happy to be here today with you. Since there's no simultaneous translation, I will talk to you in English. But as you can hear, it is not my first language. So I will do my best. And of course, if there are French speakers, I will be very happy to hear you at the question time, and you can ask your questions in French, and I will answer in French, of course. So it's a pleasure for me to be here to have this opportunity to talk a little bit more about the bill that I have worked on for more than four years, like Sheila said rightly, first as a position member of the legislature, the Quebec legislature, because I'm the one who put forward, who tabled the motion to create this select committee on dying with dignity back in 2009, a few months after I had been elected. And then we worked for a few years. I will tell you a little bit more about the process. And then by the twist of fate, I became in 2012 the minister responsible just a few months after the committee tabled this report. I became the minister responsible for the file among my social services portfolio. And we were almost done with the bill. We were at the last of the five stages of the adoption of a bill, which was the final stage. And we were short of maybe two hours that the opposition had asked to have more to a debate so that everybody could talk. And then we offered to sit during the evening or to extend the hours and they refused. And we had an election called and we didn't expect that, but we went back to opposition. So you can imagine how I felt after having been working for four years and we didn't know what would happen with the bill. But fortunately, the last election was late April. And back in May, they brought back the bill first in the history of the National Assembly. They are co-sponsors. So they kept my name on the bill with the new health minister. And we're finally able to adopt it by vast majority on June 5th. So today I will talk, of course, about what is in this bill, but also about the questions that we were facing when we started the whole process and the process in itself, the way it took place, because it was a unique non-partisan process. And I think it led a lot to the success also of this process and having been able to pass such new legislation. I should talk for maybe 40 minutes and then we will have time for questions. So that's how we're going to do it. Maybe first the context that was the context back in 2009 when we started to discuss this issue. Of course, the general context is that we see a lot of improvements, a lot of advances in medical, in pharmaceutical, also progress technology. And we see that the length of time, of course, the quantity of life grows, but is it the same thing about the quality of life? So this is an important question. Of course, people can live longer. Some doctors who came to testify in front of the committee said, somebody who used to be maybe somebody who back 20, 25 years ago would have been considered a dying patient can now be almost transformed into a chronic patient because we're able to treat and give so many different treatments, but sometimes one can question to what improvements in the quality of life. So this is, of course, a basic question. Also the present situation, some people would say that there were lots of gray areas, the care you give at the end of life, do some things can hasten the death or is there hypocrisy? Should we take a stand to clear all those issues to make sure that everybody is on the same ground? Of course, as you know, this debate has been going on for more than 30 years. When I was back in law school, there was the sewerage case that now is debated with the Carter case, the same kind of issues, but more from a criminal point of view, which I will get back on a little later. There is also all the questions relating to refusal of treatment. In Quebec, there was an important case back in the 90s also which is called NCB and which led to stating that one can refuse all treatments even if it leads, can refuse or stop any treatment, which includes a ventilator, even if it leads to dying because there is this principle of the inviolability of the person and the integrity of that person and that she can or he has to consent to anything that is given. So those were important debates that took place at that time. The closer context, I would say in the fall of 2009, there were first the College of Physicians in Quebec, the body responsible for the protection of the public concerning doctors, tabled a report that they had been working on for many years saying that many doctors felt that they didn't have all the tools necessary to ease the pain, to alleviate the pain of some of their patients at the end of their lives and it was a very comprehensive report that brought forward this idea of a continuum of care and of the idea that in some exceptional cases maybe there should be a way to help to assist somebody in dying to make sure that they don't suffer or agonize because I don't know how it is here but in their edX code of doctors in Quebec they have to make sure that once the death of a patient is inevitable they have to make sure that it happens, it occurs with dignity so they felt that they were constrained sometimes and not able to fulfill fully this obligation that was theirs. There were also two big surveys coming from the GP's Federation this is like the union of the GP's and the specialist and both those bodies said in majority that they were in favor of looking at an opening concerning assisted death so of course as you can imagine since the doctors were themselves getting involved in the debate that helped a lot also. There was this case also of a man in Quebec who was suffering from some kind of SLA, in English is it SLA anyway, the ALS who was asking for Quebec to make the debate, not Ottawa and it was the same thing with the College of Physicians saying that it is a question of health care of really taking care of people who are at the ultimate stage of their life and suffering and that we had to shift the perspective to look at it from this point of view. So this brings me to the fact also that there is very strong support in Quebec and like I've seen in the last survey that was conducted throughout Canada the support is strong throughout Canada also but in Quebec surveys showed since the 1980s always a support from 75 to even 86% which was during we were debating the issue in Quebec. This whole question of the Canadian criminal code versus Quebec's health jurisdiction this of course is something in the portrait and like I said in Quebec we wanted to look at it and the bill is drafted of course in that way it's based on our jurisdiction over health and social services issue. When I will be further along I will tell you that this was something that was agreed upon by the bar, the Quebec bar of Quebec and juridical experts also who concluded that Quebec had the jurisdiction to put forward such a comprehensive approach because you will see that the bill is not only about assisted dying it's really putting forward a comprehensive approach about how to care for people who are at the end of their life. Of course there are states and countries where these issues have been debated with legislation so there is Netherlands, Belgium, Luxembourg and many American states and it represents about from 0.8 to 2% of deaths with the latest numbers for people who require assisted dying. When I decided to table as an opposition member this motion to create such a select committee first I didn't think that it would pass because I didn't think we would be able to agree but to my great surprise all the parties agreed even though we were in opposition at the time to put forward such a committee but the committee was not only about assisted dying it was really about looking at palliative care the way we were giving it so questions of accessibility, quality, uniformity of care also what were the limits at the time of pain and suffering control measures where it could be administered was it a good idea to still give it in hospitals, in hospices we have palliative care home that are designated like you have here I'm sure and also we offer it at home so was it the good mix, the good balance and also issues about palliative sedation how this was a big something we learned a great deal about it's quite technical but it's really the fact of being able in some circumstances to give continuous sedation to people who are at the end of their life knowing that they will die without waking up but this is like the only measure that is available in extreme cases right now but of course it comes with drying of hydration and feeding so this can bring forward questions so we also wanted to look at that issue there was also this whole issue about advanced medical directives or that some people call it the living will we wanted really to look at how those directives were respected by the medical teams was there still paternalism in the approach because I have to tell you that in the Quebec Civil Code reform back in 1994 really the paternalistic approach was put aside in the following the Nancy B case for as one for example we really decided to emphasize like I told you on the inviolability of the person which means that somebody can refuse any treatment even if it leads to their dying and there was just last week a controversial case in Quebec of a woman who was imprisoned and she decided to starve herself to death but the tribunals stated that she was allowed to do that because of the Civil Code provisions saying that somebody has a right to their total integrity and inviolability of their person so if she didn't want to be forced-feeded she had the right to say no so this is of course in the... I say always in the portrait I don't know how you say that in English but I mean it's there in the picture do we want to go further because in the Civil Code what is stated about the advanced medical directives is that one has to take them into consideration once they exist and follow them in the measure possible so it's not a strict obligation to follow them so of course as you can imagine it creates sometimes problems with the family having one stand with the patient having written something else with the medical team advocating for something so we were wondering should we go further and really give them a legal value that is from which the doctors will be bound also issues about knowledge, validity should we put forward registry for these directives should we go to a notary which is something we have in Quebec that you don't have here and how formal should that all be and issues about medical aid and dying of course the self-determination value comparing to the sanctity of life value where does the common good stand when we really look at it from the point of view of assisted dying what is compassion, what is an act of compassion is it to help people to the last days even if they request help and dying to say that no we will be there no matter what and if they ask for that we should not consider it and we should just offer our help our consideration, our presence to make them go through this difficult time or compassion is on the opposite something that should lead you to take the patient's point of view and to say okay if this is what we want if this is what you want we will help you in the process as you can imagine we had many testimonies and are on the same page about that the social impacts that it could have can we assist to a banalization to something that would you know take away value from life if we were to allow people to request and yet assisted aid and dying all the question of denial and appropriation and appropriation of death do people who request such help are in denial or in the contrary are they more in appropriation of their own death or is it more a way of saying no we cannot accept death in our society so you can imagine we had also philosophical debates and all that free and informed consent how this applies when you are at the end of life and can you give free and informed consent at such a stage of your life of course regulation and evaluation of the actual and future practice at the time were there underground practice were there like I said at the beginning was there apocrisy and that should bring us forward to legislate so that this is done in the open really regulated also well can there be a possible slippery slope of course that's what we hear from the opponents of such an opening of course should the medical context be always required or could a close one perform such an act so there were all questions ethics, deontology, physicians, professional autonomy how do we deal with the physicians, nurses people who are involved at those stages of life their values with such a possibility if there is an opening what kind of opening should it be for whom only people capable of giving consent to care or incapacitated people who would have filled and anticipated demand minors what do we do with minors disabled people who would request it like we see sometimes like maybe you've seen the MP at the House of Commons, Mr. Fletcher who is himself disabled and who requests that such an aid be available to not only dying or end-of-life patients but disabled people who are not at the end of their life should we go that far should we put a life expectancy what safeguards should be put forward so those were a few of the questions we had to answer so this is why we took about three years to work on so you see the steps in December 2009 the Catholic Committee was created we first held an expert consultation in which Jocelyn Downey who is with us today who works here at the Institute and at the University of La Caine to testify because she was an expert she was our only outside Quebec expert and so we had those experts from law, from the medical field from also ethics who came, sociology also to give us their testimony which helped us to draft a consultation paper on which we started to consult the Quebec population which was really something quite innovative we had public hearings from September 2010 to March 2011 we went to eight different cities in Quebec to hear what people had to tell us we heard hundreds of people we received hundreds of briefs and that was really, really informative we wanted to have many citizens as possible who could come and at the last hour of our day was always given to a microphone a free microphone period also for people who would have come just to listen but had something to add to the debate we wanted this process to be really open of course with having hearing so many people and having so many questions we had to take 51 deliberative meetings between the members of parliament who were sitting in the committee there were about ten of us from the four different parties represented at the National Assembly and we finally tabled the report in March 2012 and what was amazing was that we were able throughout the whole process to work on a non-partisan basis in Quebec it's not that often that we succeed to that I don't know if in Nova Scotia your politicians are a lot more mature than in Quebec but in Quebec it's not a big success and at the time we were having very, very heated debates at the National Assembly about corruption, about many things so the climate was explosive and this is something I'm really, really proud about is that we were able to always when we were shutting the door of our committee to always discuss among ourselves having the best interest of people were at the end of lives in our head so I will skip the data but just to tell you that maybe a few things were particularly happy about is that 75% of the briefs of people who came were citizens this is the Paris when you bet on something the bet that we took to say that we wanted to hear real people not only interest groups we wanted to hear their stories we had care for somebody at the end of their life people who were sick themselves who had an illness who wanted to tell us how they felt about this whole issue and so we heard a lot of people and of course organizations as well but many, many citizens we had a whole web web consultation also with 7,000 people who answered our survey and 16,000 people who commented so the improvements the recommendations were first that the status quo in palliative care was not acceptable that we had to go further to improve the care the palliative care in Quebec we have a very strong palliative care policy that was adopted back a few years ago but it hasn't reached its full potential so we of course concluded that palliative care is the treatment of choice for easing the suffering of the great majority of people at the end of their life and that there exists a few gaps in the excess that we need to fill out to be filled out and also that we had to be very proactive concerning the training of people nurses, social workers doctors about the whole palliative care approach which of course is gaining more and more into knowledge but we had to do more because it's we didn't think that we had to specialize that many people in palliative care but that had to be something accessible in the curriculum at the universities for the healthcare professions we wanted to give priority to development of at-home palliative care and of course to ensure the implementation of the palliative care policy and we were even in the in the report saying that we should make a right in itself to a right to access palliative care because you have a general in our legislation in Quebec you have a general right to access care but we wanted really the palliative care to be recognized and also to have clear protocols and standards relating to specifically palliative terminal sedation end of life care planning we thought that this should become legally binding to respect the autonomy and the integrity of the person that it should take a more formal approach if we wanted to give it a special binding force so either in front of witnesses this is the report you'll see in the bill how this became in a bill but just to tell you about the recommendations so that we had to give it a formalized form if we wanted to be legally binding and make sure that of course those are accessible in the registry in the patient's files and that the physician make sure that they request about it that they know about it so that it just doesn't stay there and is not implemented because I have to tell you that we heard from a respect of the person point of view stories that were not exactly what we expected about doctors who told us themselves sometimes we just don't follow what the patients want because we feel it doesn't make any sense it's not reasonable we argue with the family and sometimes the patient is not exactly at the center of everything because the family it's somebody who's old and they will say I don't think that's what she really wanted and now that's certainly what she wants and that it leads to great discussions and that it's not very easy for the health professionals to be in the family, the will of the person so they told us all that medical aid and dying the proposal was to give this special form of care based on values of respect solidarity and compassion if some of you are interested in knowing more of course I suggest that you go read the report it's on the national assembly site available in French and in English because we really explain all the evolution of the Quebec society concerning law concerning medical practice and concerning also the values in society and how much autonomy and respect of the person have become key values and that we could not take care of that so in a new and exceptional fashion in the continuum of care we felt that we needed to have an exceptional possibility for people who are suffering facing incurable diseases and that not only it would help them not agonized at the end of their life if they requested but that it would give them a great deal of comfort while they are living their incurable terminal disease to know that if the worst was to happen so that even if with the best palliative care their pain cannot be controlled cannot be alleviated that this possibility would be there for them so the fundamental frame is really the continuum of care so there is one word that you have to retain it's really that word that the whole idea is to not have a break between palliative care and this idea of helping somebody having an assisted death it's really a continuum and that the perspective has to be from the patient always to give them to provide them with the best care the best comfort possible at the end of their life so this is why also we invested while our very short 18 months we were able to invest for the first time I mean there were investments in palliative care before but really sums that were officially dedicated to palliative care the largest amounts that were ever invested in palliative care the expression was chosen the medical aid in dying because it refers to the fundamental value of supporting somebody this is why the word aid is there medical because it has to be in a medical context and it implies the intervention of a physician and health professionals maybe I can say that for those vocabulary issues euthanasia as you know is the expression that is somebody else giving help to have somebody die but this is not an expression that we were willing to put forward for two reasons because euthanasia first of all doesn't imply a medical context it can be anybody a close one and we see it in other jurisdictions like in Switzerland it doesn't mean you are in a medical context so that was not something clear and euthanasia as you all know also doesn't imply in itself in the expression that it comes from the will from the request of the person and we have tragic historic use of that word that show us and also when we talk about animals and all that of course it's something that is a very charged word and it doesn't imply those two fundamental ideas that the request is from somebody who is ill, who is at the end of life and also in a medical context in the report we concluded that there were issues that we were not able to put forward either because we felt that it wasn't right or because we felt that we were not able to get consensus so we didn't recommend that people who had dementia or Alzheimer's disease could request even in advance such a possibility because there were very important debates about that because we felt that it was very even more complex because of course when you have such a disease at what time will you decide that the person is fulfilling the criteria which we will see later at what time is the person really at the stage where they wrote they wanted their life to be ended and are they really at the end of life and how are we able to measure that but of course some will say if we go towards the integrity and the will of the person and it's the only only thing maybe we should allow it but there were no consensus about that and later you'll see that in the in the bill we kept the same approach and I have to tell you that if we had gone further on that issue we would not have had consensus and the bill wouldn't have passed also minors were excluded because we felt that to take such an important decision that you had to be of full age so the bill well just very briefly this is what I told you about the stages and the final adoption with 94 in favour and 22 against it was a free vote all the opposition parties were unanimously in favour and the government was about two thirds in favour one third against this is why we were worried that it wouldn't come back but finally it came back so the values are really written down in the bill of dignity compassion respect of the person's autonomy and very very important protection of vulnerable people this was of great concern throughout the whole process that we didn't want to impair this very important value of protecting vulnerable people so respect the principles are based on respect for end of life patients recognition of their rights and freedoms that must inspire every act performed in their regard end of life patients must be treated with understanding, compassion, courtesy and fairness and with respect for their dignity, autonomy needs and safety the health care team providing care to end of life patients must establish and maintain open and transparent communication with them we felt we needed to write that because we didn't hear everything we wanted to hear when we had those health professionals coming you know how it is sometimes so sometimes doctors are very in a rush maybe in Nova Scotia it's paradise but in Quebec it's not and so sometimes they don't talk so openly about the steps that are coming forward how bad the situation is the nurses do a great deal of work around that also but we felt that everybody had to deal with their own issues of course there are issues coming from the physicians the nurses themselves they can be not that at ease with discussing such important issues with people who are approaching end of life but we felt that it is their responsibility of course and we wanted to put that really clearly in writing so of course the bill follows the unanimous recommendations and since I was co-chair of the committee and became the minister responsible I was still approving of my own recommendations so that was easy for the follow up I didn't have mixed personality issues so I was still I found those recommendations just a few months later to still be quite coherent so this is the basis of the bill we worked on but still to translate recommendations into a bill it's still a challenge it took from September to June of that year to finally table the bill in June 2013 and really it really comes from the recommendations the whole project continuum of care the comprehensive and integrated vision of end of life care is really at the heart of the bill so there's two components the rights, organization and regulation relating to end of life care which include palliative care and medical aid and dying medical aid and dying is not described or defined as part of palliative care because palliative care practitioners of course were very vocal about that seeing that it was something else so it's not part of palliative care but it's part of the continuum of care also the other main component is the establishment of the advanced medical director's regime so there is a set regime of medical directives so end of life care means palliative care provided to people at the end of their lives so that includes care provided persons at the end of their life including terminal palliative sedation in palliative care and like I said on the other hand medical aid and dying so the bill affirms like we had suggested really the right for everyone to end of life care that is appropriate to their needs so you always have to start from the needs of the person maybe provided to the person in a facility maintained by an institution palliative care home or hospice or at home and special rules applicable are applicable to the different providers of end of life care if it's in an hospital issues for really the experts but you can look at it, it's very easy to read the bill also it's less than 100 sections in one hour you will have read it special requirements are there for terminal palliative sedation and medical aid and dying and also we establish a commission on end of life care which has a double mandate a mandate to examine all the questions regarding end of life care and so that the minister responsible can ask them their expert opinion on issues that would come up they can also from their own initiative suggest you know debates or that the minister look at some issues and they also have the role to monitor the enforcement of the specific requirements pertaining to medical aid and dying and to see how the bill applies on a day to day basis on that commission there will be sitting members from the law field, medical field social work so ethics advanced medical directives I will go quickly if some are interested it's really based on the recommendations that you saw we suggest to really give them a binding force once they fulfill the formal requirements which is a form with two witnesses this is a form that is being drafted now at the ministry I hope they do a good job I'm not there anymore but we were really working and having a comprehensive form so that it's easy for the people and to write it and for the medical teams to read it and apply it but also in Quebec you can go in front of the ministry to have it done really with a professional once those forms formalities are fulfilled those have binding effect and we will be creating a registry so that people who have decided to fulfill such directives can send them and they will be accessible throughout a registry which will be accessible so that people in the medical field will be able to know because also on the medical card health insurance card there will be a tag saying I have advanced directives so the team will know to look at the registry so medical aid in dying well it stems from the recommendations it's really an exceptional strictly controlled option for cases of exceptional suffering a patient who meets the following criteria may obtain medical aid in dying this is section 26 of the bill if ever you're interested the person has to be a full age capable of giving consent to care be an insured person within the meaning of the health insurance act this is to make sure that not everybody either from the rest of Canada or throughout the world come to Quebec just to have this help the person has to suffer from an incurable and serious illness suffer from an advanced state of irreversible decline in capability so there is no there is no improvement possible the person of course is at the end of life this is important to stress out this cannot apply to handicapped people this is really for people who are terminally ill the person has to suffer from constant physical or psychological pain which cannot be alleviated in a manner deemed tolerable I explained that you could maybe have a medication that will create hallucinations because we see that in some patients really a state of great great great anxiety and it's the only way that you won't be suffering physically but then you will have in the last days of your life those hallucinations or be always in a mood because some have refractory responses to some medication so this is what we mean by that and there is also the whole process which is clearly constrained and regulated medical aid in dying will only be provided upon completion of a formal process so the person will have to sign a request using the form provided for this purpose and it will have to be a repeated request so it's not something one day you get up and you say that's it, that's enough I just want you to help me today and that's not how it's working you have to request it in the bill it's drafted clearly in different interviews that you will have with your physician which will also consult the team that is taking care of the person so the physician must verify the persistence of suffering and that the wish to obtain medical aid in dying remains unchanged by talking to the patient at reasonably spaced intervals giving progress of the patient's condition the doctor receives the request must then come to the conclusion as well as the second independent doctor that has to be also brought before the patient to make sure that in his opinion or her opinion also all the criteria are met that all conditions are met a physician who provides terminal palliative sedation or medical aid in dying must once it's administered give notice to the council of physician dentists and pharmacists from which he or she is a member and give a notice also to this new commission on end of life care so really the whole idea was really to find the best balance between respecting the will of the person but making sure that it really is something exceptional for those people who with even the best palliative care cannot see their pain and suffering be elevated at the end of their life that this is a thorough process with the team being involved in assessing to make sure that it is a persistent will of the person to this is I have to say the strictest bill if you compare it with other jurisdiction because two approaches come forward the approach that you have to be at the end of your life in the states they call it the six month you have to have no more than six month life expectancy here if you have questions I can come back with the reason why we didn't put six months all the doctors advised us not to do that because it's something you know doesn't stand it's very hard also to predict but in the states it's the approach to end of life approach the three or four countries who have it it's a suffering it's really the suffering that really provokes the possibility to getting this kind of help so this is why you see sometimes if you really are interested in the field that there are people who are not really at the end of life in Europe who will be able to take you know advantage of such a possibility because it's really the suffering in cases when the person is not at the end of life which is their main criteria here it's both so we feel it's a very safeguarded bill but which really brings forward an important advance for people who are ill so it's a balance we feel and responsible approach that can lead to better end of lives which less suffering and reflecting each one's aspirations it can also make us stressed out is the person's process throughout their illness to know that the force can happen this is there there was this young woman who came to testify before us who has degenerative disease and she told us you know whenever I go to a public place first thing I look at because I've reduced mobility as it's are to me such a bill is an emergency policy and it eases it will ease greatly my stress and anxiety knowing that if the worst was to happen because she will have problems with her lungs and all that that you know I will not die in a very terrifying way and that's if the worst happens so this was of course also something important I think it strengthens the commitment we should have to patients their families, caregivers in a constant concern for the protection also of vulnerable people this is why the safeguards are so strict for some people it is too strict I have to say but for us it was very important that this was very safeguarded I didn't stress that out but the doctors, nurses have an objection of conscience which means that nobody has to accept to administer medical aid and dying but there is an obligation to report to the head of the institution and the process has to be put in place so that there is a referral process because somebody was at the end of life cannot really start to shop to find a doctor or a place where people are able to help them when they are in the last days of their lives so there is this recognition of the objection of conscience of caregivers but there is also the counterpart which is to have a process of referral to me on a more personal basis I have to say that it gave a real sense to my role and our role as a member of the National Assembly and my role as a minister of course one of the reasons why I tabled in the first place back in 2009 this proposal was really because I felt that it is a responsibility of the elected members with the public to address such sensitive very emotional difficult issues I feel strongly although I am a lawyer that it is not for the courts to decide themselves on such important issues so for me it was very important to make sure we could have a reasonable debate in the best circumstances possible with an ongoing dialogue with the people and I have to say that some people told me I was crazy at the time that I was new and full of ideals that it would never work and all that and people are so cynical about politics and the best giving the best example but I felt really strongly that we needed to bring forward such an approach a dialogue without knowing exactly where that would end but I was quite confident in the wisdom of the people and of the society in Quebec and I have to say I am really proud that the bet I took was a success and to bring this bill now of course is the government's responsibility to make sure that it is implemented properly but I am confident that it will be the case because there is a lot of work we gave ourselves 18 months before making it become implemented so I am confident that it will be a great a great advance for Quebec society and I was very happy to discuss it with you today in about 25 minutes for questions thank you other than the emergence with the Belgium model which I know is consulted and subtracted can you give me a rundown of the pros and cons that you obviously discussed and argued about in terms of whether or not to include physician assisted suicide in your bill obviously there are probably a lot of complex factors can you give me a short summary of why they argued against it I'll go back to the is it normal that I cannot move anymore it's okay yeah there were there were arguments on each level of course people because you can see the pros side because this is more of course at the end in the bill what is emphasized on some people were saying that with the best palliative care if everybody had access to the best palliative care accessible there would be no need to have a medical aid and dying that it was just a question of accessing the best care this is something we took very seriously to see that if were those requests coming from the fact that the care was not available and what really realized is that most people who came forward to testify about close ones who had had very difficult end of lives there were people who were in very good palliative care units and if you were discussing strongly with the doctors and the nurses I would say more the nurses because of course sometimes the relationship is closer with the nurses that you see more than the doctor so they were telling us that of course there are situations that with the best care you cannot alleviate the pain of some people that there is also a great deal of untreatable anxiety which can also contribute in agonizing person who cannot be relieved of their physical but also psychological so that was a big one like why did you not include well medical aid and dying is you might associate it with physician assisted suicide it's really as we define it I don't know it's really the fact of administrating those medication to somebody to make sure that that person see the definition I don't have it in front of myself I should have brought it in English but see their agony or suffering stop while introducing their death so it's really but it cannot be I don't know if you're pertaining to the distinction between criminal code and health well physician assisted suicide I mean when we talk about assisted suicide in the criminal code for example it's really giving the means to somebody to take their own life so it doesn't it doesn't say why in what circumstances and it's really the person for example who would drink something to die this is not the approach we are taking it's really since it's on a continuum of care it's really the physician who is responsible to administer the proper medication to the person if the person is at that situation that they can fulfill all the requirements and so that they want to die because they suffer too much so it's really not the person it is the doctor that is responsible to administer the medication I thought you wanted me to go through all the arguments that was an interesting question are there other questions or comments? where are the other problems for you and also are you getting people coming to combat? yeah it's not in force yet and I don't think we will in order to get insurance coverage in Quebec you have to have been living there for 6 months and to have permanent residency so would people move leaving their close ones just to be there for almost maybe a year 6 months, 8 months to make sure that they can obtain it maybe some very very strong minded people, maybe Justin Donny would do it but I don't know so I don't think so what are the other provinces? I think it's important to stress out that this is a very important year coming in front of us on all those issues because we have our bill in Quebec that will come into force some people say they will challenge it pro-life groups and little group also of physicians that are against there are of course as you can imagine there is no unanimity and I think in a democracy it wouldn't be healthy so they are always there to challenge and it's good but there is a small numbers of very vocal physicians in Quebec who petitioned and who say that they might contest bring an action to contest the bill but it's an important also year because of the Carter case on the criminal code scale which contests the validity of the prohibition of assisted suicide exactly on the same grounds as the Suradrigues case and as you can imagine if the Supreme Court agreed to look at it 20 years later based on a very similar situation it might mean that they want to review where the society is now at the difference and I think it's important to really emphasize on that is that assisted suicide in the criminal code is really something that by extension now is seen as having something to do with the medical context but that was not at all when it was brought in the criminal code because we had an expert juridical committee that really worked three experts on the issue after we tabled the report before the bill and if you go back the assisted suicide was in a duel I don't know if you say that people at the time would fight one again another and it was a way to make sure that the person who had lost and maybe was suffering on the ground could not ask their opponent to ease their pain and to have them die this is the origin so of course it's not the same context at all and now it's seen as something that can be you can make a link with the medical context but it's a lot broader because assisted suicide it's really about having a close one being able to help somebody in their life give them something so it's very broad our approach is very narrow and it's really based on the health it's innovative of course it's new but it's really based on this continuum of care like I said but it will be an important year because we will see what the Supreme Court decision is and of course if they come to the conclusion that the assisted suicide provision is unconstitutional it can have impact also you know on everything else but something that's important is that even though even if they come to such a conclusion you have to be aware that the provinces will have the responsibility in the medical context to see how we go around doing this and in Québec since our all approaches based on our jurisdiction we feel very confident that it would pass the tribunals test somebody else yes a person who was terminated and diagnosed with depression I'm just wondering how that would affect their ability to provide for the important consent to approach that very good question some people were asking us would somebody was depressed ask for this somebody was depressed and who doesn't have an incurable disease cannot ask for this because depression is not a terminal incurable disease you follow me your question is if somebody has an incurable disease and furthermore they are they have a depression the answer is that you will have the same test as with any other care that the person could get if they have depression so psychiatrist would come to say is the depression severe enough that the person is not able to give clear and informed consent because the depression is taking their judgment away but you can have depression and depression can be controlled and you can still be able to consent with the same test as with other kind of care when people get a diagnosis of cancer some of them can be very depressed it doesn't mean you are in a depression it's the same thing at the end of your life you know you are going through the biggest passage change in your life of course many people will be depressed it doesn't mean that they are in a clinical depression but some of them can be in a clinical depression that impaired their judgment so this is very important to make sure that the informed consent is there but is the test the test have to be stricter we don't think so because you know everyday some people decide to stop their dialysis how do you say that when you have a dialysis they decide to be to have their ventilator taken away those are very very important decisions that will lead to the same conclusion and sometimes people could go on for years you know but they have that right so it's the same kind it's not easy to assess are they in their sound mind or is it something you know it's the same when people have 80% chances of being cured if they get chemotherapy and they refuse it because they are too afraid they feel they are too afraid of the side effects they don't want to lose their quality of life and you know it can look like a total irrational decision but you have to respect it so it's the same basis of analysis but it's something that the physician has to be of course very aware of but you know that's why the principles are there also of a constant communication often you know the patient it's something that you don't discuss just two weeks before the person dies sometimes it's something that the person will tell you know if this worst case scenario happens I just want you to know that I think that I would request such an aid of course once you get there you might you know feel it's not that bad you don't want it or the opposite you think never never I would request such a thing but then at the end of life you're suffering so much and it's so difficult that you're requested but you know that's why we urge the medical teams to really discuss those issues ahead also there was a I think so when you said about with the doctors with your physician and an independent individual and then I looked at the head of Alzheimer's Alzheimer's goes through various stages sometimes it can come on or shall I say progress quite quickly other times slow so is this why there's no like six months Alzheimer's is not something that would qualify because well unless if it's like it's the same if you have cancer end of stage four terminal cancer you're at the end of life and you have Alzheimer's at the early stages and you're still of some mind of course you can request it you know but the question was just if you have Alzheimer's disease can you request it you cannot request it unless you would qualify for all the criteria really be at the end of life still be of some mind usually it doesn't happen that way so this was a tough one a very difficult one and this is one that is still open but we decided not to give that possibility yep there's you yeah okay well that's an incredible story of perseverance and drive and success and you should be proud of yourself oh thank you I have two questions so I'll see if I can sneak both in well actually no I'll just ask one and then if there's time I can take all the questions so one is how does this all fit with the criminal code and does it have to do with prosecutorial discretion and have you been granted that and the second is there just were so many political decisions along the way and I'm wondering whether there are somewhere you wish you had not compromised or just one that you wish you could not compromise okay and there was you I will take care my question is really complicated because I'm the daughter of someone who has Alzheimer's and I'm never down the actual day and we've had these conversations but my mom's rule is is ever such that I'm no longer myself or is causing great you know suffering to my family that she doesn't want to continue with care so is there some way yes my mother has a medical directive but having Alzheimer's she is still able to keep a sense as to what's going on with her she's still an early phase where she says I've had enough of this I know what it's going to do to me it's not six months of care it could be a few years down the road but she knows what it's going to do to her she knows what it's going to do to her and Michael stops she knows what it's going to do to her family and that's unacceptable suffering to her how do we move on with her wishes this is the toughest question on which we had a lot of debates she can refuse treatment and this is what is possible in the state of the law right now the thing is that do doctors accept that easily the answer is no but we feel that in Quebec with the advanced medical directives regime that we're setting out those are exactly the conditions in which this will help because your mother well in Nova Scotia maybe I'm not going to pronounce that can refuse treatment if she's still of sound mind first she can say I don't want this anymore if I have pneumonia don't want you to treat me I want to die, it doesn't make any sense I don't want to be force-feeded things like that in Quebec what is possible is that in advanced directives somebody who has Alzheimer's can say at this stage if I reach that stage at Alzheimer's disease where I don't recognize my close ones I cannot move almost anymore I don't want to be treated anymore it's different from asking medical aid and dying that we didn't provide for but it's okay to say I don't want to be treated if I have pneumonia if I have an illness if I have a health problem let me go don't feed me with the spoon, I don't want that those are things that will be written in the form that you can say I refuse and we feel that when somebody refuse treatment they need to get palliative care you know because she will become at the end of life because of a refusal of treatment and then she needs to be taken care of by palliative care treatment so that they alleviate the pain that comes from the refusal of treatment I've heard that happening through people I know that advanced medical directives have been ignored because while she's not in her right mind right now she doesn't understand what I'm saying so I really know the fact that she said not to do this and I'm going to treat for that medication is there any way that if you're in a close work like your spouse could be interviewed and motorized having been interviewed and have some sort of great grown-up that says as the mistresses spouse or child can I testify that this is truly what her wish is for if she wrote her directives in advance and if the family is in compliance with that those should be respected but the problems that sometimes people can contest was that was she really of someone at the time but you can say yeah of course she was and that's what she wanted and of course you are the substitute consent givers also your opinion should be and in Quebec I don't know if it is here but if somebody refuses if they are becoming capable but they refuse treatment they say no no no you have to get court consent so if they refuse if the close ones say no usually you have a good case so yeah yeah you can you have the expert here okay so yeah criminal code of course we feel we are on two different paths it's really our opinion in Quebec that was really confirmed by experts that this whole bill is based on our health jurisdiction the provincial health jurisdiction that we have and you have the other path which is a lot broader of assisted suicide which is criminalized which is something else and a debate that is a lot broader that includes handicapped people and you know you can have it not ill people at the end of their life so we feel really safe about our constitutional grounds but some people would say but what if it wasn't clear and what if doctors didn't want to help because they feel maybe they have the sword of the criminal code on top of their head so since provinces also have the jurisdiction over prosecution and administration of justice because it is the Quebec attorney general who decides if they sue or not of course there is a directive that can be implemented to say that once you're in compliance with the bill we don't feel we need that but it's like a belt and suspenders approach you don't see that in English so if you feel that we don't feel we need it because we are under this care and this health jurisdiction but to make sure that everybody is reassured there will be most probably when we were in government we were to issue such a directive to the prosecutors saying that there is no way that you can prosecute political decisions I think that the decisions were the good ones the Alzheimer's the degenerative cognitive diseases was a tough one but I think that I don't know how you say in English but one thing you have is better than two that you could have we say anyway we wouldn't have a bill if we had pushed for that a burden in the hand is worth two in the bush there you go a burden in the hand so that's it the committee that is the end of life commission that is put in place will be able if the minister feels that this issue has to be looked at and recommendations have to come forward will be able to look at it and I think this is what will happen in the coming years but this is a very important first step it's an enormous step and so I think it's better to have that to have a very strong consensus the Quebec consensus is a little lower on this issue although it was still a vast majority of people would have wished this possibility to be in the bill but we wouldn't have had the adoption of the bill in the National Assembly there you go last one you mentioned that it's important in terms of the medical piece in terms of it happening in the medical context and performed by medical practitioners so there was a reference to dentists and pharmacists are they in regulations no no it's just it can be a doctor of course it's always a doctor not a nurse, not a close one it's a doctor it can be at the hospital at the palliative care home or at home because doctors can go at home the dentist stuff that you saw it's the council of doctors they love a unit of an hospital that's because of course there's pharmacists and dentists in hospital they have nothing to do with medical aid and dying it's just a body that will need to be notified about the administration of medical aid and dying dentists have nothing to do it's because they are in the same in our organization they are in the same administrative unit but of course it's doctors will review it thank you I feel that we have to stop here but I will be available I just want to announce a couple of upcoming events on January 28 so that's very soon at 7 p.m. next door in room 105 Joclund Downey will be giving a public talk which is entitled a conversation about dying what the law has to say so this is part of Schulich's many law school series that will be interested in that again that's the 20th of this month and coming up next month in our health law seminar series on Friday, February 27 we have Judge Marie Ellen Trapelle Levant who is acting as the BC representative for children and youth giving a talk that's entitled Canadian health and social policy on vulnerable children are we punishing or ameliorating disadvantage so I encourage you to come out to that as well so once again thank you so much for coming from Quebec and sharing your experiences and expertise with us thank you